| Friday September 30, 2005 We brought Michael to Sacred Heart to see Dr. Renfroe today. When we walked in the front door of the hospital we were greeted by Donna. She escorted upstairs via a special elevator to the third floor. Donna watches this website and it was a pleasure to meet her. Dr. Renfroe is one of the top neurologists in the area. His medical knowledge and his bedside manner is a great combination. He turned the baclofen flow on Michael's pump up to 650 micrograms and bo-toxed his legs and one of his arms and I think a thumb. We visited the PICU gang while we were there. It was great to see them again. Monica, Diane, Buddy, Leticia, Dr. Northrup, Don and even Nina (hope I spelled that right), took the time to see us. They pretended that they were there to see Michael, but I know that they were really there to see me. I'm just plain lovable. As we were standing in the PICU, I saw Michael's old room and the smell of the place triggered a lot of memories. The hospital aroma will always remind me of June 7th. Don led us to the special elevator and gave us first class treatment. After we loaded Michael into the truck, Brenda turned the key and the ignition and nothing happened. We realized that one of us left the lights on and the battery had died. We loaded Michael back into the wheelchair and rolled him back inside the hospital to stay cool. Otis, a gentlemen that was there to visit his sister was kind enough to jump us off. I offered to pay him, but he would not hear of it. His sister has pneumonia, I wish her a speedy recovery. Thank you, Otis. Michael did very well on the ride to and from Pensacola. He sweated like a hog, but he still did good. Michael had a special visitor tonight. I won't mention his name, but I am glad that he stopped by. Take Care, Dave Thursday September 29, 2005 Michael had a good day at school today. He sat in a foam chair that looked very comfortable. Sitting up may not seem like a big deal to you, but when you have spent the better part of 4 months lying on your back, it is a very big deal. Wes, Michael's teacher, and a couple of the aides came up with a way to make Michael comfortable in his wheelchair. He was able to sit in it for about 45 minutes. These people want their kids happy and they find solutions to make it happen. Michael was put on a tilt table for about 5 minutes. This contraption allows him to be vertical for awhile. When we got him home, he sat in his recliner for a while. His head control is getting much better. He was drooling more than usual, but it could be that he was tired from the day. We later washed his hair and gave him a sponge bath. A few visitors stopped by to see Michael. I know it was hard for one of them, he has known us for many years. Seeing Michael in the condition he is in, he understood why I feel the way that I do. Tomorrow we will go see the neuro in Pensacola. We will use the opportunity to visit our friends at Sacred Heart. They gave the best care to Michael and we would not have made it if it were not for them. Finally got a chance to see the statements of one of the people that was at the beach that day. I hope this person plans on bringing Johnnie Cochran back to life to represent them, because that is their only hope. Does the glove fit? Go for the jury trial, roll the dice, take a chance, maybe you'll get lucky. I'm sure that a jury will be sympathetic to you and say that Michael deserved what he got. I wouldn't worry about a thing. I would just trust my attorney to get me off of these charges. It's just a little misdemeanor charge, what is there to worry about? To the rest of you, thanks for checking in. Take Care, Dave Wednesday September 28, 2005 Today was swimming day at school for Michael. The coach put him on a floating mattress at first, but Michael was squirming too much, so she took him off and held him around the chest and carried him around the pool. I was a little concerned at first since Michael's day at the beach back in June, but he seemed to really enjoy it. He was in the pool for about half an hour. The coach talked to him the entire time, encouraging him. I think that half hour in the pool was better therapy than the two months we spent in Atlanta. Colleen, the wheelchair lady, made a trip from Panama City to bring Michael a better loaner chair. We put him in it at school. That did not go well at all. He screamed in pain and we had to transfer him back to the other chair. We think it is hip pain, (that sounds familiar). Colleen said she couldn't believe that Michael was discharged from the hospital in the condition he is in, (that sounds familiar). We loaded him into the truck and brought him home. We made an appointment with a neurologist in Pensacola for Friday. We have to find out was is causing his pain and why he cannot ride in a wheelchair. We hit a local thrift store and bought a recliner. Michael sat in it very well. He looked like the old Michael sitting up and watching TV. He sat comfortably for about 30 minutes. If I add wheels to it, maybe we have the wheelchair issue resolved. Talked to Angela, our social worker today. She is great. This lady is impressive; a Godsend. Of course she works for Sacred Heart, so she has to be good. Somebody wanted my attention on the message board, so I will give her recognition. She posted a message, #150, back on September 12th. She said what a tragedy it was and how cool Michael is and some other postive comments. Then today, she posted a reply to post # 151, defending one of the accused in this case. She posted this with the name of "Friend of a friend." She then replied to message #158 making slanderous remarks about me. She also commented that it was Michael's fault what happened to him. The name she used this time was "A good Friend." I am the admin of this site and I see all IP addresses. It is funny that all of these posts have the same IP as Charlee Harrison. Charlee, if you want to trash us, use your real name and don't post a BS message about Michael. It seems that Charlee has a hard time deciding whose side she is on. Take Care, Dave Tuesday September 27, 2005 Today was Michael's first day of school this year. He didn't go to Choctaw or FWBHS, he attended Silver Sands School. It is one of those places that you drive by and don't pay much attention to. You know that it has something to do with special needs kids, but you forget about it after you drive by it. You don't know what you are missing. This is the best school in the county. The staff is top notch. Michael's teacher is Wes and his nurse is Heather. He has about 6 other kids in his class and each one is special in their own way. Today he had music therapy. He received oral care and his mouth was spotless. Tomorrow he gets to go swimming in their heated pool, that should be interesting. Today wore Michael out. I am not sure if it was the truck ride or going to school, but he has been low-key since he has been home. I have made the mistake of watching a video of Michael tonight. In the video he was about 5 years old and was sitting in my lap. We were laughing and playing with Matchbox cars. I would give anything to have that time back. I will write more tomorrow. Take care, Dave Monday September 26, 2005 Michael had speech today with Mia. She worked on his swallowing by giving him some Italian ice. He did swallow a couple of times, a little slow, but it's a start. He is probably tired of being fed formula through a G-tube and is ready for some real food. I let him smell some wasabi today, maybe that will get the juices flowing. Our loaner wheelchair once again is giving us problems. We are supposed to get him to school tomorrow and using this chair will present a real challenge. Even though he was fitted for one last week, it will still be a couple of weeks before he gets it. I have the duct tape and bungee cords ready, because he is going to school in the morning. The school environment has got to be good for him. He will have his different therapies and hopefully have a full day of stimulation. A special thank you to Melodie at the school board. Brenda gave him range of motion this afternoon as I got things ready for his bath. We used a blow- up boat as a tub and once again made quite the mess. There has got to be a better way. Hosing him down in the yard is probably the best solution, but we can't get him there because the loaner wheelchair sucks. Have I mentioned that? We will be filing for Medicaid, SSI and any other government aid we can get. There are a lot of programs out there that I knew nothing about, but am starting to learn. I was just holding out for the free cheese, but I'll take the other assistance, too. Say what you want, but this is still the best country in the world. We are bidding on a couple of things on e-bay to make Michael's life a little easier. We are looking for another hospital bed, so if you know anyone that has one for sell, let us know. I'll trade you a loaner wheelchair for it. Take care, Dave Sunday September 25, 2005 Michael slept good through the night, probably due to the Geodon he takes at bedtime. It is an anti psychotic drug, but he takes it for the sedative properties. I got him out of bed today and put him into his loaner wheelchair. I took him out of his loaner wheelchair and immediately put him back into bed. The chair is a piece of crap and it is all but useless to him. The crossover sling, however, worked great. I was able to hoist him right out of bed. Gotta love that Hoyer. Michael was anointed with some special oil today from Jerusalem by a local preacher. In the past, he has had the holiest of water sprinkled on him. He has a prayer cloth and a St. Michael's Medal. I would get a witch doctor to come in and dance around his bed if I thought it would help. I will do what it takes to get that boy healed up. I have searched deep in my heart for it. I have prayed for it. I have meditated and became one with the universe seeking it. I have looked everywhere for it, but I can't find forgiveness for the people that are responsible for my son's condition. I found hate, but not an ounce of forgiveness. I tried, I really did. As I watch the video clip of Michael being loaded onto Lifeflight, I wonder what is running through the minds of the guilty. Are they concerned about him, or are they just worried about their own skins? Are they already planning on going to the hospital to work out their lie? Did they care if my son lived or died as long as they didn't get in trouble? I think I know the answer to that. To make me feel better, I wrote the judge a letter telling him why I thought that these people should receive the maximum penalty for their part in this. I have found that writing has become my therapy, so I do it quite often. I have written every parenting organization, MADD, SADD and even Carmella and Jeb Bush. I figure the more people that know about this incident, the better the chances to save someone else becomes. Besides, it kind of makes everybody involved in this incident well known. Some of the people may not want any attention, but too bad, should have thought of that on June 7, 2005. I am sure that they will spend a lot of time thinking about it. Take Care, Dave Saturday September 24, 2005 Another good day. So many people have done so much for us once again. I am in awe of their kindness. Michael was fitted for his boots at Hanger Prosthetics today. Brian came in on his day off to help out and we appreciate it very much. Another Brian came by today and installed an Air Conditioning unit for us. He did this out of the kindness of his heart. Many thanks, Brian. I received an email from Lee, the best speech therapist ever. She is amazing with Michael and always lifts my spirits. Thank you for the email, it was exactly what I needed today. Joseph, you were a stranger and are quickly becoming a friend. Thank you for all you are doing. The other Joseph, thank you for your kindness today. Thanks, Millie, we received your package. You have helped out a lot, thank you. Mary, I received the book and have started reading it, thank you for everything. Jeanne, I have been reading your book, thank you. Dave Friday September 23, 2005 A very busy day today. We loaded Michael into our rented Budget cargo van and went to see Dr. Krist at WW Med Center. What a great doctor and a very compassionate person. He let us know that he was a partner in our dilema. He told us that he would be there for whatever Michael or we needed. I have always liked Dr. Krist and today I saw why. We went to have Michael's cast taken off of his feet at Hanger Prostethics late this morning. Michael was ok for the removal of the casts, but started getting agitated when he was being fitted for the AFO's. Brian, the ortho guy said that we could do it in the morning. The place is closed on Saturdays, but yet he is going to help us out just the same. Unbelievable. I figured we had encounters with two great people today, therefore our luck would probably run out with the wheelchair lady. I couldn't be more wrong. She was amazing. She is ordering a stander for Michael. This is a device that will allow Michael to stand up. These things are expensive, but are great to have. She then measured him for his new chair. I have seen a lot of therapists work with Michael, but she topped them all. She knew exactly how to treat him and to talk to him. The way that she soothed him when he was in pain was touching. She was so positive about Michael and his recovery. Today was a Godsend. The people that helped Michael were saints. Maybe God looked down and saw that we needed a little help and sent these people our way. I don't think these people read this update, but if they do, Thank you for your kindness, it was what we needed today. Take Care, Dave Thursday September 22, 2005 Michael is sleeping well through the night these days. The pulse-ox goes off once a night, but it is always a false alarm. I bought an alternating pressure pad for his bed so that he does not have to be turned every 2 hours. He is usually asleep by 8 and wakes up at 6:30. I have been sleeping on a mattress on the floor close to his bed, even though I have an video monitor and an audio monitor. I am sure over time I will learn to relax, but I think it will be quite awhile. We didn't make it to our Dr. appt. because it was just too difficult to load him into a truck. We re-scheduled for tomorrow and rented a van. Michael has been accepted into a special school here in town. I toured the place today, and I was very impressed. Everyone was so positive and caring. The equipment they have rivals what most rehab facilities have. They even have two tilt tables. He will have OT, ST, and PT. What really amazes me is that it is a public school funded by the county. We want Michael to have a lot of stimulation and he will get it there. Michael had speech today with Mia. She is really good with him. She suggested techniques that I have not seen used before. She is definitely one of the best. Tomorrow, we go to the doctor, then off to have his casts removed, and then he gets fitted for a wheelchair. Busy day. Talked to the State Attorney's office today. We want to make sure nothing or nobody falls through the cracks. Take Care, Dave Wednesday September 21, 2005 Well, Michael finally made it to the courthouse. After we fed him, changed him and dressed him this morning, we spent some nerve- wracking moments getting him into the Bronco. We threw out the original idea of laying him back in his wheelchair and putting the whole wheelchair in the back of the Bronco, it just didn’t seem to work. We ended up transporting him the only way we could – Dave and Brandon physically lifted him into the front seat and put the seatbelt on him. We had given him Ativan this morning, so he was nice and calm, and his leg muscles were relaxed. He did very well for both the car ride and the wheelchair ride, although we managed to scrape his poor elbow getting him into the chair. We were about 15 minutes late for court, so we missed the first plea of “Not Guilty” entered by the 16 year old that alledgely brought vodka to the beach. Unbelievable. Somebody please explain to me how he’s not guilty. His next court appearance is scheduled, I believe, for October 19th. We should have had lots of practice transporting Michael by then, so we will not be late for this one. We were admonished in front of the whole courtroom by the judge for being late this morning. Having a handicapped child is new to us, but we'll learn. Now, what adult gave this 16 year old the vodka? Whoever furnished it has alot of 'splaining to do, Lucy. Come clean, son, tell everybody where you got the vodka. Get it off of your chest, you will feel much better. We are not letting go of this until all of the truth has been told. The second 16 year old, entered a plea of “No Contest” today. His next appearance at Court is October 5th. The justice system is slow, but we have nothing but time.The State Attorney's office is aware of our position on these cases; no pleas, no leniency. We are pushing for the maximum punishment. Pretty low key day once we got him back to the house. He stayed very relaxed today so it was easier than usual to do the range-of-motion on his arms and legs. When Dave got back from work, we attempted to give him his first bath, other than a sponge bath in bed. This was accomplished by lifting him from his bed to the floor in a blow-up kiddie pool (thanks for the tip, Cheri). It was quite a production, towels and water everywhere. I’m sure we’ll get better at it with time. He seems to feel much better after his bath. A quick thank you to Joseph for your help. Thanks for checking in with us. Brenda and Dave Tuesday September 20, 2005 Michael had speech therapy today. I love speech therapists, they are always cheerful and full of energy. She came in tobasically evaluate Michael and try to form a plan of attack. Michael seemed to like her. In the afternoon, the OT, PT, and Social Worker stopped by. We got Michael into his chair, it took four of us to do it, though. We didn't try the sit,pivot, transfer as we were taught, we used the 'you grab his legs, I'll take the trunk, you hold the wheelchair, and you make sure he doesn't fall on the floor ' transfer. Not as smooth, but it worked. The chair is not made for him, and he kept sliding out. What a disaster. We gave up and put him back in bed. I didn't feel that bad at failing since the trained professionals failed with us. The social worker was a tremendous help. She told us about the different programs available to us. She knew her way around the system and was very knowledgeable. She went out of her way to help us out. One of the therapists admitted that her weakness was with kids. She said she does great with adults, but kids are different. She looked around and found a place in town that specializes in pediatric therapy. She even stopped in and checked the place out. They are working with our insurance company to see if we can use them. We were supposed to get the proper sling for the hoyer lift, but it did not come in today. The other therapist picked one up and drove from Niceville to drop it off to us. Talk about nice. This group of people are from Sacred Heart, which is our favorite hospital. They did not waste time, they identified the problems and came up with solutions. Thanks ladies. Those of you that follow this site, thank you. Whether you stop by to see how Michael is doing or you are just curious, at least you stop by. You may or may not agree with everything here, but you keep coming back. This little 14 year old boy has caused a lot of controversy and has drawn a lot of attention to underage drinking. I have made myself a target by starting this site, and some of you have taken your shots at me. I have taken a few shots myself. It doesn't matter, because it has never been about me. It is all about Michael. As we are all aware, tomorrow is court day. 9:00 AM. We plan on having Michael there. Stay Safe, Monday September 19, 2005 Brenda came over and spent the day with Michael while I attempted to go to work and concentrate on my job. Little success there. Michael pretty much just laid in bed all day not knowing where he is or how he got in this condition. He is used to this, he has been doing every day for the past 3 months. I'll take a guess that he spent part of the day crying out in pain but he could not tell Brenda where it was coming from, nothing new there. I'm sure Brenda talked to him hoping that today would be the day that Michael would say something to her. I'm sure she did not get her wish. We did have a visitor today. She was from a home health service that is going to work with Michael. She told us the statistics about anoxic brain injuries. She said that the most improvement is during the first three months following the injury. Michael has not shown much improvement during this period. She said that he might improve over the next year, but it would not be at the same rate as the first 3 months. She indicated that there were not any therapists in Okaloosa County that were that familiar with anoxic injuries. She stated that normally they would be in a big city. (Atlanta?). She said that Michael might live to be in his 30's if things go well for him. That is if you call staying in bed, wearing a diaper, not knowing what is going on around you, living. As you can tell, it was a real up-beat conversation and it's what every parent wants to hear. Once again, we died. That's what is hard about having a child with a brain injury, you die over and over, with no end in sight. Those of you that know me, know that Michael has always been my world. My one weakness. On June 7, 2005, the people at the beach took my world from me. Every day for the past 3 months, I have watched my son suffer. Every day for the past 3 months, I have thought about what these people have put us through. These people lied, withheld information, tried to justify their actions and even tried to blame Michael. They could have come forward in the beginning, but they chose to make it hard for me. They think if they get an attorney, they can plea this down or lie their way out of this. Don't count on it. If you brought the alcohol to the beach that day, you are guilty. If you brought the alcohol to the beach and left it there for minors to get into, you're guilty. If you lied in a criminal investigation, you're guilty. If you withheld information, you're guilty. If you had the chance to stop a law from being broken, but chose not to, you're guilty. If you came to the hospital and lied to save your own asses while my son was on life support, you are Guilty! Nobody walks away! Are you sweating a little bit, boys? DJJ has a room waiting for you. Wednesday, September 21, 2005. Justice for Michael. I haven't forgotten you, darlin'. October 17, 2005. The day of reckoning is upon thee. Dave Michael's oxygen levels dropped a couple of times through the night. Since the pulse ox meter didn't have an alarm, I slept lightly. Michael woke up in a pretty good mood and Brenda showed up to spend some time with him. We spent some time on the phone trying to make appointments for Michael. What a cluster that turned out to be. He is still under the care of CHOA on paper. He will not become property of the local pediatrician until he examines him. Michael also has to see a neurologist in Pensacola. The problem is that we cannot just load Michael into a vehicle and drive to these appointments, he has to go via some medical transport. We could use the local coordinated transport here if we had the proper wheelchair- which we don't. Michael need laterals and a headrest, which our loaner has neither. Even if we did have the proper wheelchair, we could not put him in it, because of the sling that was furnished with the Hoyer lift. It is useless. This is the sling that Christie and I both attempted to use at CHOA and failed. It is unsafe to use with Michael. Three of us attempted it today, and decided it was best to put Michael back in bed before he slid out of the sling onto the floor. The sit, pivot, transfer would have worked if Michael's legs were not splayed out, pointing in different directions. This all seems very familiar, where have I heard this before? I remember now, Atlanta! We explained our transportation problem to the pediatric people and we were wished the best of luck. When I explained to the neuro people that we would have to take an ambulance to that appointment and it would cost $500. She said that my insurance should pay for that. I explained to her that my insurance company did not pay for the ride from CHOA to FWB, I doubt seriously that they would pay for an ambulance ride. She told me just to fax the discharge papers to them and they would look them over and maybe they would not have to see him. I told her that I was concerned about Michael's lack of swallowing and coughing and I wanted to bring him in. We would be going on Wednesday, but Michael has to be in juvenile court for a couple trials. September 21st, in case you forgot. If I have to push Michael's hospital bed to the courthouse in order to get him there on that day, I will. People are going to see what a misdemeanor looks like. Rough day, but at least we're home. The wonderful people at Pfeiffer Medical Equipment brought us a pulse ox with an alarm, so I should sleep better tonight. Dave Well, Michael finally made it home today. Three months and $300,000 ago, he walked out of the door happy and carefree, ready to enjoy his summer. Today he was rolled back into the house on a gurney by the EMS crew. Since June 7th, he has died, come back to life, (thanks Jeff), rode in a helicopter, had two plane rides, a couple of ambulance rides, went to Atlanta, had his hamstring and ankles cut, had a baclofen pump implanted, had a g-tube installed, has been on TV, the newspaper, radio, the world wide web and has returned home. Pretty exciting summer, too bad he doesn't know that any of this has happened. Michael looked good when he got here except for the spit on his lips. He is still having problems swallowing, probably due to the baclofen. Good thing the medical supply company brought over a suctioning unit, an oxygen generator, an oxygen tank, and a pulse ox meter. The bad thing is that the meter does not have an alarm that will sound when his oxygen level drops. That means it will be a long night for me. Am I back in Atlanta? Spent the afternoon getting his prescriptions filled and going over the equipment that was delivered. I have become quite the expert on medical equipment. Since we are out of the hospital environment and in the real world, we will find out how many government programs that we don't qualify for. We will make sure that Michael continues to have PT, ST, and OT. We will continue to give our all for Michael. We want him to get better so that he can enjoy his life. Our lives are not what they once were. Going through the motions. We didn't get our miracle in Atlanta, maybe we'll get it here at home. Gotta run, got to do my nursing duties. I am not just a Dad anymore, I have been classified as a 'caregiver.' Dave Wednesday, September 14, 2005 We started out with OT, which was more working on casts. Not much to report there. Speech Therapy was next, and Michael tried to make “kissing” noises with his lips for Michelle. He looked like he was really trying. Physical Therapy in the afternoon was also for casting, Michael now has both casts back on his feet. We will have to schedule an appointment for them to come off, and get his plastic boots, once we return home. We are returning home tomorrow. For a while today, it didn’t look like we were going to. Michael didn’t run any more fevers, but his oxygen levels dropped again. After some discussion with Dr. Johnson, it was determined that it was a possibility that his baclofen pump was too high. It has now been turned down to 600 Micrograms. We will work with the Pediatric Neurologist in Pensacola to determine the right dosage. For the people I work with back home: Special Thanks to Gisela and Sylvia for running interference with our insurance company. Looks like Cigna will be paying for our return flight home tomorrow. That’s a huge, huge load off of our minds. And as always, love and thanks to Christine, Sherri, and Tammy for everything they’ve done for us. Our journey at CHOA has final come to an end. I’m leaving this placed with mixed feelings – I am so ready to take Michael home, but I’m scared of leaving the hospital environment. We are not even allowed to transport Michael by car once we get home, it has to be by medical transport since he has no support in his neck or trunk area. I won’t miss the plastic couch, that’s for sure. It’s ugly, uncomfortable, and I’ve shed a lot of tears on it after the lights are out at night here. I’m sure this plastic couch has seen a lot of tears from the Mom’s that preceded me, and will see a lot of tears from the Mom’s to follow. I hope the next Mom that sleeps here walks away from this place happy, with a child that’s healed. Goodnight for the last time from CHOA, Room 403. Brenda Note From Dave: Hey CIRU, thanks for putting up with me. I know that you will miss my sarcasm and all the blankets that I took. Take care. Therapy is different here these days. Our first scheduled therapy was an hour of Occupational Therapy at 10:00 am, and today’s session was again devoted to working on Michael’s casts. 11:00 a.m. we had Physical Therapy scheduled with Christie, which I always look forward to, but Speech Therapy decided to “Co-Treat”. So PT consisted of holding him in a sitting position on the edge of the mat for Speech. He did well for Speech, though. We are pretty sure he is hitting a “yes” button when the answer to a question requires a “yes”. He also appears to be shaking his head “no” or nodding his head “yes” when asked. It is sometimes hard to tell, because his head stays moving constantly when he is trying to make any part of his body move. We had no more therapy scheduled until 1:30, which was Speech again. He did well again for Speech. They are documenting everything they think he can do for our discharge paperwork, which will be passed on to the Okaloosa County school system. We are hoping he can go to a Special Needs school when we get back home. Michael started running another fever this afternoon, around 100 degrees. Dr. J made the decision to keep him here until Thursday, instead of discharging us tomorrow. He wants him to go a full 24 hours with no fever before discharging. He also started to storm, which I haven’t seen in a while. Ativan took care of it. Michael’s oxygen levels started dropping a little bit again this afternoon. The nurse suctioned out his nose and put the oxygen mask on him. Christie from PT came in to discuss the casts that they had cut off, cut in half, and velcroed back together so we could take them on and off before he gets his plastic boots when we go home. They had decided that he still has occasional storms, so these really weren’t going to work. He still stiffens up his feet and legs, so it would cause blisters. They are going to recast his ankles tomorrow. I know that this is a good thing, but it means another day of no physical therapy. You know, I still find it hard to believe that Michael is being sent home in this condition. He can’t hold his head up straight, he can’t sit up in a wheelchair. We tried to go into the small doorway where the Speech Therapy room is today, but he keeps his legs stuck straight out and in a “Y” position. We couldn’t go through that doorway. And they expect us to be able to transport him by car like this? I guess whenever he needs to see a doctor once we get home, we’ll just have to call an ambulance. I’m sure CIGNA will take care of it (not). Tomorrow I am going to tell the Case Manager that in addition to the equipment that has already been sent home (hospital bed, feeding pump, Hoyer Lift, wheelchair) we would like to have a Pulse-Ox monitor and a supply of oxygen. We can’t take the chance that Michael is going to have respiratory problems that we have no way of monitoring. If they’re going to send him home in this condition, I would think that they would need to send the equipment required to take care of him. I’m sure my frustration level is showing. 64 days in this hospital, Michael does not even sit in his wheelchair as well as when we first got here and does not hold his head up as well, either. See that picture of him in his chair on the home page? He hasn’t sat that well in his chair in several weeks. At least we used to be able to take him outside for some fresh air and sunshine. I stand by my statement that Michael is not ready to be at home yet. Any ideas on other places to take him to get better are more than welcome. I was mostly packed up for our 10:00 am departure tomorrow, (which we are paying the full $2800 for IN ADVANCE - THANKS CIGNA) I guess I need to unpack a few things since we’re staying another day. Brenda Monday, September 11, 2005 It was a short night. The technician did not put an external catheter on Michael last night, so I woke up at 1:30 am to three people getting him changed, and changing his sheets. He was VERY vocal about being uncomfortable and having his sleep disturbed. I wish I could understand what he was saying. It sounds like a foreign language, but it’s more “speech” than we’ve had from him for a long time. I have a feeling that if I could have understood what he was saying while having his sheets changed right under him, it would probably be words that he used to get in trouble for. I also did not have a blanket last night, the laundry cart was empty, so I had to use about 12 sheets to cover up with. I think Dave really is selling this stuff on eBay. Michael looked really good this morning. I washed his face for him and tried to brush his teeth. He opened his mouth for me when I asked him to, but he didn’t like the toothbrush in his mouth so he clamped it shut. I’ll try again later. Dr. J and a new Resident came in this morning. Michael did not seem to be in pain this morning in his hip area. It was possibly just a muscle spasm, which the baclofen should take care of. Dr. J had the physical therapist take off his ankle casts today. They were scheduled to come off on Friday. They cut the casts in two halves so we can put them back on. He wanted to check for sores, to see if that might have been what was causing pain last week. His feet look good. He also tolerated his wheelchair much better today, which is a very good thing. It would make no sense to send him home to be bedridden. Michael’s right-hand plaster cast was taken off today, and a fiberglass cast put on its place. His arm casts are “serial” casts, they will straighten out his arms over a period of time, recasting in straighter positions each time. Word on the floor here at CHOA is that they’re sending us home on Wednesday of this week. It was supposed to be Tuesday, but in addition to the pain Michael was having last week, he now has a rattle in his chest and needs to be suctioned out periodically. I’m glad they’re keeping him one more day to watch him. A very nice case manager who was filling in for Therese came in today to talk about our transport home. She wanted to know if we wanted to fly or ride by ambulance. The choice is ours, since Cigna, the insurance company, refuses to pay for either one. Due to the outrageous cost of gas these days, the price difference is not very much. Looks like we’ll be flying. Most therapies today were taken up with cast removal and recasting, so there’s not a lot to tell about his progress. He was pretty tolerant of all those loud saws and castings, though, so I’m quite proud of him. Michael had his shower this evening and is resting comfortably. No storms or major agitation today , so we’ll call this a good day. -BrendaSunday September 11, 2005 Hello, Arrived back in Atlanta about 4:00 pm. My son Brandon brought me. He is such a great person – 12 hours worth of driving round trip, just to see his brother Michael and to keep me from having a heart attack due to driving in Atlanta traffic. When we first walked in, I thought Michael looked pretty good, other than the fact he had oxygen tubes coming out of his nose and 2 new casts on. Then I looked closer, and I could tell he wasn’t feeling that well. Both of my kids get weak looking around the eyes when they don’ t feel well. He was also pale. Dave told me that Michael had been running an elevated fever, and that they had done an x-ray of his lungs. His oxygen levels had been dropping earlier, and the respiratory therapist did not like the way his lungs sounded. They have been suctioning out his lungs periodically today. I was also told that they had turned down the dosage on his baclofen pump,(699 micrograms) they think that might have something to do with his breathing problems. Oxygen levels have stayed good since I’ve been here; the respiratory therapist gave him a breathing treatment and took him off the oxygen. His X-ray came back good. Before unpacking for the week, I searched the room for the snacks brought by Mary Jo. Dave wasn’t lying, he ate them all up. Hope you’re still sick, Dave. (Just kiddin’.) It looks like I’m going to have to have some help this week getting him changed and dressed, although I usually do it by myself. When I try to roll him to his side, he fights it. He wants to stay on his back. Michael has been trying to vocalize a little bit. Not sure what he is trying to say, unfortunately. It is now 8:45 pm and he’s on his last feeding for the night. He’s resting comfortably. Time to get the plastic couch ready for the night. Goodnight, thanks for checking in. Brenda Note from Dave: When I arrived home, my grass was cut and edged perfectly. You think that would be enough for the neighbors to graciously do, but attached to my door was a beautiful blue bow with a card that said "Thinking of Michael and Family." It was signed "Your Neighbors." These people really touched my heart. They have given so much and have supported us to no end. Thank you, my friends. September 8, 2005 Michael slept well until 12:30 AM. He was dreaming or something, because he was very vocal. Not sure what he was trying to say, but he was squawking about something. The occupational therapist made an early house call this morning to check his cast. She added some more padding because his fingers are rubbing against it causing sores. Speech with Dina was next. She worked on some counting and "YES" "NO" Cards. Dr. J came in to check him out and as he rolled his left leg, Michael let us know he was in pain. Dr. J ordered another blood test to check for inflammation. He also said that we may do a bone scan to check for arthritis. This is the leg that has had the hamstring and the tendons cut on his foot to lengthen them, in addition he has a cast and a knee immobilizer on. The pain could be coming from anywhere. Dr. J said that Michael can't go home in this amount of pain so we will probably be here a little bit longer. It is probably for the best, we want Michael to medically stable before we take him home, besides, it will give me more time to steal so more sheets and blankets. $70,000 a month, I'm getting my money's worth. Physical Therapy was next. All of Michael's limbs have casts on them and I could not get him out of bed due to his pain, so the Therapist did not have much to work with . A little range of motion and we called it quits. We gave Michael some Percocet and it kicked in quick. He spent the next few hours resting peacefully. Dr. J came in and increased his baclofen flow up to 800 micrograms. That is quite a bit of baclofen from what I understand. Dr. J said if a muscle spasm was causing Michael's pain, that would take care of it. About 5 hours later the Percocet wore off and the pain moved back in. Tried Motrin, waited an hour- nothing. Back to Perocet. I hate to give him drugs, but I hate to see him in pain even more. He is doing well, now. I went outside today, first time since Monday. It was a beautiful day in Atlanta. I would have loved to have been tossing a football around with Michael. Dave September 9, 2005 John and his boss came in to put a cast on Michael's only uncasted limb, his right arm. They chose to use a plaster cast because it would work better than a fiberglass one for this application. Michael was a little agitated, but did ok. Word of the day "PAIN". As soon as I started getting Michael dressed this morning, he was in PAIN. I loaded him into his chair and brought him into the gym for PT with Christie. It was my day to learn how to transfer Michael from the mat to his chair using the dreaded Hoyer Lift. We put Michael in the sling and I attempted to do what was asked of me. Michael was posturing so bad that he almost slipped out of the sling. I lowered him back down on the mat and Christie was going to show me how to do it. She could not do it, either. I didn't feel so bad, then. She laid down on the sling and I had to put her in the chair and then back on the mat. Michael, meanwhile lied on the mat and vocalized and sweated. I told her he was in PAIN. She was concerned, but did not know where it was coming from. A nurse came and took a blood sample from him. After PT we had OT with John. John had concerns about the cast that they had put on today, it was not setting right. There were soft spots throughout it. The reason for this? Michael was sweating. Why was Michael sweating? Because he was in PAIN. We loaded Michael up and brought him back to his bed for Speech with Paula. Michael was in too much PAIN to concentrate on speech therapy. Gave Michael Tylenol for his PAIN. It didn't do any good. After speech therapy, he had speech therapy again, this time with Lee. There is something about her that Michael really responds to . He looked right at her throughout the session and would open and close his mouth when she asked him to. He would try so hard to count with her. Lee was very impressed with Michael's performance. She told the nurse and Dr. J. how well he is doing. I could hear the excitement in her voice. She seems to have this bond with Michael. He really pays attention to her. She is so positive that Michael hears her and is doing everything he can to talk. "He's in there and he is fighting to get out." is what Lee told me. She really likes Michael and I think that the feeling is mutual. I wish she lived in FWB. At the end of speech, Dr. J refilled Michael's baclofen pump. This is done using a hyperdermic needle and injecting the baclofen through his skin into the pump. After speech, we gave Michael Motrin for the PAIN. This didn't help. A little while later, Ativan was given to Michael to help with the PAIN. Ativan does not help pain, only agitation. After an eternity, he finally got some percocet and guess what? Yep, it took care of the PAIN and he is resting comfortably. Since we are being discharged next week, my concern is the amount of PAIN that Michael is in. This kind of pain cannot be managed with over the counter drugs. We cannot just keep throwing pain killers at him, we need to find what is causing the PAIN. A resident here, Dr. Gupta, is moving on to another hospital to finish his residency. He is competent, has a good sense of humor and shows compassion for the kids. I like the guy. I wish him the best of luck. I want to add that today is Nurse Kathy's birthday. Erin, we will probably be gone before your next shift, so I want to thank you for the great care that you have given Michael this week. It has been a pleasure. Dave September 8, 2005 Hello from Atlanta, GA. A busy day here in the CIRU at CHOA. Michael slept well through the night. Started the day with some PT with Christie. I had to get checked off on the two person lift with Michael. Basically, it is the way two people can transfer someone from a wheelchair to a bed or mat. I passed. Michael got worked out on the mat while I sat in his chair and drank coffee. He was once again in pain and the sweating started. He survived PT and then on to OT and Speech with Lucy and Michelle. John must have found a mirror and was busy looking at himself, he was not around. (That's for the 'Dry Humor' remark, Big John). Anywho, Michelle got Michael to respond to some questions by pushing a button. Lucy helped and kept Michael calm. Michael was scheduled for 2:00 to have a cast put on his left arm to straighten out his wrist, so ativan was ordered for 1:30. The theory was that he would relax and the cast could be put on with out a problem. Well, at 1:00, an X-ray was ordered to see if the catheter from his baclofen pump was still in place because Christie noticed that he seemed to be close to storming earlier. When he was wheeled out of the Lab, he was in pain. They had rolled him on his side to do the X-ray and he was hurting. Got him back upstairs and gave him the scheduled Ativan. It didn't work, because Ativan does not work on pain, just agitation. Lucy and John were able to cast his arm and an hour later, he calmed down. He had speech again with Michelle. She really encourages Michael. She sees the little things that he does and compliments him on it. The X-ray showed that the catheter was in place. Source of the pain still unknown. Dr. J kicked his baclofen up to 660 micrograms. Discussed transportation for Michael to go home. The case manager was trying to get him a flight because it is a long haul back to FWB. Cigna shot down the plane ride and has offered us a horse drawn carriage instead. Either that or we can carry him home on our backs. Insurance companies- save that for another day, another website. Mary Jo stopped by with a bag full of goodies for me. I ate so much I almost got sick, but I'm not sharing it with Brenda. Thanks, Mary Jo, you are really good people. I hope that you will visit us next time you are in town. Sorry for the late update; it was enema night in room 403- it worked. Dave Wednesday September 7,2005 Another day in Atlanta. Another day at CHOA. A peaceful night for Michael. He slept well and the pulse-ox alarm only went off once. The day started with pain. Michael still has pain in what I am guessing is his hip. The music therapist and child life therapist had to come to our room. Beth sang a few songs and I think Michael enjoyed it. Next was PT with Christie. She worked his legs and tried to find the source of Michael's pain. Not sure if she found it, but he howled a few times. Next, Michael got in the Eva Walker. With Christie's help, he took a few steps. After that, it was speech. They evaluated him using the JFK Coma Recovery Scale. Even though he was in pain, they had to do the evaluation, it is required by Cigna. Michael's score went up by one. He opened his hand on command 3 times. He also stuck his tongue out 3 times. When Michelle held a ball in front of his face and asked him what it was, believe it or not, he said "Ball." Now, I am skeptical about a lot of things, but I saw and heard what Michael did today. I wish he would be consistent with things, then I would feel much better. I cancelled his afternoon PT because of the pain he was in. The pain led to agitation, so after a couple of hours, we gave him ativan. He calmed down, so we took him to X-Ray to check out his hips. Came back good, nothing broken, no bone growth, and nothing obvious. Probably just really stiff muscles. Took the dressing off of his incision from the hamstring lengthing and it is healing nicely. John and Lucy came in for OT. They did some range of motion and put the splints on his hands. I finally gave them my home evaluation. They were proud of me. He got a bath and he looks squeaky clean, and since he's my son, I'll add that he looks very handsome. Dr. J. kicked his baclofen up to 600 micrograms. He wants to loosen the legs a little more with the increased flow. They scheduled Michael for an outing tomorrow to the Coca- Cola plant tomorrow. I thought that was strange considering he is in a lot of pain when he is in his chair. Besides, it's not like he would really be able to participate. When I pushed the issue some, they admitted it was a way to teach the parents how to manuever their child in public. These guys are good, they almost got me on this one. Remember, they rehabilitate the parents as well as the kids. We won't be going, so I get to learn how to operate the hoyer lift. There are really good people here, I hope that you never meet them. Dave Tuesday September 6, 2005 Michael's night was restful. The day started with a visit from the Case Manager to discuss all of the things that the parents need to know about taking their child home. She is trying to set up an ambulance for the ride home. If Cigna shoots this down, I guess I will have to load him in the back of the truck and bungee him down. Then we talked about ramps and hospital beds, wheelchairs, hoyer lifts, and feeding pumps, you know, what every home should have. All I need to do is put in a Koi pond and pay someone to wake me up every two hours and it will be just like being at CHOA. Michael had speech this morning and I thought it went well. He didn't say anything, but God love him, he's trying. When people with brain injuries begin talking, the things they say are not always appropriate. There is one young man here that is going through that stage. He informed Brenda's fiancee on Sunday that he should open his ears, shut his mouth and get out of his room. I think he learned a lesson about messin' with J. Best git, boy. At least he held back the vulgarities this time. I will be glad when Michael gets to that stage. He was scheduled for speech again the afternoon, but as I went to get him dressed, he cried out in pain. Speech was cancelled. Jenna came in and convinced me that sometimes it does the patient good to get out on the mat, so we loaded Michael into the chair for OT with John. We worked his hands mainly, because he keeps them clenched tightly. The botox should kick in within a few days and then they may cast his arms. Can't have too many casts, that what I always say. Michael sweated like a hog through OT, but seemed to tolerate it ok. Next was PT. We removed his knee immobilizer and worked his left leg. This is where the pain appears to be coming from. Not sure if it is the hip or knee, but it is a serious amount of pain. The sweating continued, but no real agitation. Dr. J increased his baclofen flow to 550 micrograms. We are getting in the range where things should really start happening. He is being weaned off of his effexor and was taken off of his Bromocriptine. We will watch him and make sure it doesn't cause any problems. A long day and I'm sure a short night. Take care. Dave Monday, September 05, 2005 Michael slept well last night. He slept through the pulse-ox alarm going off every hour. Today is considered a weekend day here at CHOA, so therapy was light. We started off with PT where Michael used the Lite Gait walker. This went pretty well until he started getting uncomfortable. Dr. Wilson came in and gave him botox injections in both of his arms to loosen them up. I couldn’t watch this because they are extremely long needles and I am a coward. It didn’t seem to bother Michael at all. Dr. W also increased the output of his baclofen pump. Still fine tuning it. Next he had Speech Therapy. The therapist would hold up two objects and asked him to look at a particular one. He did this several times with different objects. The therapist was impressed and asked me if I saw him do it, she wanted a witness. I did see him do it. OT was next, as we were loading Michael into his chair, he began to scream out in pain. Back into bed with him. So OT did not go well. Gave him some percocet for his pain and he is doing well, now. I hate giving him drugs, but the pain that he has can’t be stopped with Motrin or Tylenol. Brenda had been working with him last week on saying “Hey.” It looks like she spent a lot of time with him. When I say “Hey” to him, his mouth forms the word “Hey”, and sometimes he grunts. A step at a time. Getting control of his muscles so that he can form words is a very big deal, this is a major step. He is getting there. I think Michael would benefit from staying here a few more weeks and that is one of the battles I will take on tomorrow. Thanks for stopping by and take care. Dave Sunday, September 04, 2005 Atlanta. Arrived at CHOA this afternoon. Michael was in the middle of speech therapy when I arrived. The therapist was counting and Michael was trying to count with her. When she got to "Five", Michael's tried to say it along with her. His mouth formed the word "Five", but no sound came out. It was actually amazing. I noticed his mouth is moving a lot a more today compared to last week and he is making a lot of sounds. He will talk soon, I am convinced of it. Wonder what he has to say? Wouldn't it be great if he decided to talk on September 13th? He started having pain, not sure where it is coming from, but he is in pain. Remember, he still has the casts, immobilizer, and bacflofen pump. Tried Motrin, then Percocet. It seems to be working, he is calming down. I see a lot of Michael in him today. He's fighting to come out. I am ready for him, it has been 3 months. Maybe not much time for the rest of the world, but a lifetime to us. The most I paid for Gas on this trip was $3.00 a gallon, not bad, considering I heard it was $6.00 a gallon. Perhaps tomorrow I will have some clever, witty things to say, but I'm just too tired tonight. We appreciate you stopping by. Dave Past Updates cont. Saturday, September 03, 2005 Michael is really making a lot of mouth movements. No sounds are coming out yet, but he is trying to talk. I’ve started working with him on trying to mouth specific words, instead of just random mouth movements. Today’s technician, named Grace, was in this morning and commented on his mouth movements. He seemed to be looking right at her. I asked Michael to say “hi” to Grace. No sounds were coming out, but it sure looked like he was saying “hi”. Grace was so excited that she was clapping her hands. She is so sweet. As of yesterday, Michael is wearing his elbow splint on his left arm only. He really needs it more on the right, but he has a sore on his right elbow, we think from rubbing it onto the bed rails. Or it could be from the stander in PT, not sure which. He will be getting the botox shots for the spasticity in his arms tomorrow morning. This will take 3 or 4 days to really kick in and hopefully relax his arms. He received is last oral dose (through the G-tube) of baclofen today, his pump flow was increased again today to 450. They will check Tuesday of next week to see how well the botox worked, and whether or not they need to increase the pump flow again. Our first therapy was at 11:00, physical therapy. Three people tried to accomplish what the Mighty Christie does by herself, getting him up to the Eva walker. After much huffing and puffing and finally getting him standing, the physical therapist decided that this was too hard, and we should be using another walker, the “Lite Gait” walker. Much more huffing and puffing later, they had him in this one. The Lite Gait walker actually has a sling under him, between his legs, and behind his back. They started off walking Michael across the gym floor, but they had it raised a little too high, he was more “flying” than “walking”. I pointed this out so they lowered him. Michael did pretty well, he is trying to make his legs move on his own. He really seems to like being in an upright position, especially since his casts are on, and his feet are no longer turned inward. I think he likes bearing weight on his feet. After walking, there was much huffing and puffing getting him back i nto his chair. He can be a handful sometimes. He also seemed to be in some discomfort when we got him back to bed. I tried Tylenol, but he never really settled down. Speech Therapy came to our room during his lunch feeding. Michael was still very agitated, would not hold his head still, and was banging his casts on the bed rails. She tried to massage his face but he was having none of that. She finally left, and charted him as “too agitated” for Speech Therapy. We had Occupational Therapy scheduled for 1:30. He still had not settled down. I managed to get him in his wheelchair (wore me out) and to the doorway to the gym. All the way down the hall to the gym he was fighting being in his chair. His legs were straight out and stiff, and if he hadn’t been wearing a seat belt, he would have slid right out to the floor. We made a U-turn in the gym doorway and came right back to the room. Usually I can get him in and out of the bed with the electric hoist, but he was so agitated I called for help, I didn’t want him falling to the floor. After he was back in bed I called for Ativan. The Occupational Therapist came in to do range of motion on him in bed, but he was so agitated she said she’d come back in about 20 minutes, after the ativan started to kick in. She came back at 2:00 pm. He was settled down enough for her to work his arms. He stayed calm all afternoon. While he was resting, we had visitors. Mary Jo and her husband Norman came to see us. They brought hats for Michael and Brandon, and a card and gift for me as well. THANK YOU, Mary Jo and Norman. God bless you. The card they brought me referenced Psalm 40 talking about the “black pit” I was in yesterday. I didn’t know Psalm 40, so I looked it up on the internet after they left. Again, thank you. This was a comfort. You know, God does not always answer prayers. If He did, Michael would get up out of this bed and say “Lets get out of here, lets go home.” I know this is not going to happen. However, I had a different prayer answered today. I prayed for guidance with something I have struggled with and cried over for the past few days. God works in mysterious ways – my guidance was granted in the form of an email from my new friend Cheri. I had not told Cheri what I was going through, but somehow she knew, and provided my answer. Thank you Cheri. Today’s my last day at CHOA, my last full week here. Dave will be here next week, and the following week, they are sending us home. Michael did not get as well here as we had hoped, but we are still not giving up. Our current hope is that being home, being in a familiar place, maybe just not being in a hospital environment will help Michael. And I’m still hanging on to the hope that prayer helps, so please keep them coming. Brenda Friday, September 2, 2005 I know you’ve all had days when you were depressed, and didn’t feel like talking to anyone. I’m having one of those days. The black pit sucked me in today and hasn’t let me out yet. I finally cracked, and I’m not proud of myself. I’ll try this again tomorrow. Brenda Thursday, September 01, 2005 We started off at 9:00 a.m. with PT. We were scheduled to be with someone named Cindy, who never showed up. So we were with a very nice lady named Amanda. Michael did assisted rolling & sitting, and trying to hold his head up. He really doesn’t like holding his head up, he’ d rather keep it either to the side or hanging straight down. At 9:30 we went downstairs to the Koi Pond area, and I worked with Michael on holding his head up. I think he tried for me a couple of times, but he seems to think that “center” is hanging his head over to the right. At 10:30 we had another round of PT with Christie. This was a good session, he actually did assisted walking. This is accomplished with the “Eva Walker”. It is a tall table with wheels and a brake. Christie hoists him to his feet in front of this table and then stands behind him. He can’t bend his left leg at all because he is still in a knee immobiler from his hamstring surgery. Christie moved his left leg for him, then asked him to move his right leg. He can’t seem to pick up his right leg on his own, but he did bend his knee at the appropriate time, every time. Christie finished the steps for him by putting her foot under his and moving his foot forward. She walked him across the whole gym floor. At 11:00 we had combination Speech Therapy and Occupational Therapy. They had decided to do the JFK Coma Recovery Scale again. The last time they did this, he scored a 12. Today he dropped 2 points, he scored a 10. Different therapists were testing him today, so maybe it’ s all in who does the testing, I don’t know. He did “blink to threat” a couple of times, with his right eye only. Nothing yet on the left. At 2:00 was Occupational Therapy again, with John and Lucy. They stretched out Michael’s right arm, opened up his hand, and placed a blow-up device along his whole arm to keep it straightened out while he sat on the edge of the mat and they tried to get him to hold his head up. They tried to get him to track a mirror but he wasn’t able to do it. I told them that Michael had “blinked to threat” with his right eye during the JFK test, and they tried to get him to do it again. No luck. 2:30 was combination Speech and Music therapy. Michael tried really hard to make some sounds to songs that he’s familiar with. A couple of times I thought he was actually going to do it. Not yet, though. 3:00 was back down to the Koi pond. I had asked John earlier in OT if he would mind giving Michael a haircut. He gave him a haircut not long after we first got here and did a great job. When we got back from the Koi pond, John was waiting, Michael got his haircut, and it looks so much better. The reason I don’t cut his hair myself is a) I’m scared. Michael flops his head around a lot; and b) I tried when we were at the hospital in Pensacola and it came out terrible. I was told I better keep my Day Job. After his haircut I gave Michael a shave with the electric razor. He didn’t mind me doing his chin but didn’t want me near his upper lip. Guess he wants to look like his dad. Michael is on a new feeding schedule. They are increasing his feeds during the day, and tapering off his nighttime feeds. This is because he is going home soon and there won’t be nurses in and out of his room all night. That’s pretty much it for the day. Thanks for checking in on us. Brenda Wednesday August 31, 2005 Michael slept well again last night. I’m daring to hope that his “storms” are over with. He had the staples removed from his abdomen and spine this morning, from the baclofen pump surgery. Dr. Gupta said we are going to start weaning Michael off of his blood pressure patch and his oral (G-tube) doses of baclofen this week. PT was with Melissa & Darrin at 10:30. Dr. J had given Michael the OK to use his regular wheelchair again, he can now sit up at more than a 45 degree angle. But because he has not done any sitting or standing in a couple of weeks, they had him “standing” in what is called a Tilt Table. Basically he is laid across a table and strapped tightly on, then the table is rotated to a standing position. There was a brace for his feet. He tolerated it very well, in fact he seemed very content to be in this position. OT was next. It was a nightmare. Michael has been constipated for several days, and he chose today’s OT session to have what is known as a “Code Brown”. We had to clean him up right there on the mat. Luckily there is a curtain that draws around the mat for privacy when these things happen. It wore me out getting him cleaned up. The sling that is used with the electric hoist got dirty, so at the end of OT (which was brief, as we used most of the time getting him cleaned up) the dreaded Hoyer Lift appeared. It is quite a production to get him in the Hoyer Lift. When we got back to the room, it was another big production to get him in the bed. Seems like the whole room had to be rearranged (bed, nightstand, chair) to get the Hoyer lift into the room and in position. When all this was finally done, the tech came in the room. I let her start Michael’s water and feeds while I went downstairs, outside, and found a quiet place to cry. This is my life, now; and while I never stop being aware of it, it sometimes hits me harder than other times. I cried for Michael, I cried for his dad, and I cried for myself and the rest of my family. And I thought about the people that did this to Michael. They have committed all of us to a life sentence of changing diapers, trying to prevent bedsores, sponge baths, and finding the best way to move Michael around. And in exchange for our life sentence, they are charged with misdemeanors. They will probably be sentenced with nothing more than picking up trash on the very beach where our lives ended. Michael started getting a little agitated during his lunch feeds. He was still a little agitated during 1:00 PT with Melissa, which was more standing with the Tilt Table. He sweated and was agitated while standing. 1:30 was OT again with Lucy and John. Started major agitation. I finally waved the white flag and called for Ativan. Michael received his new elbow splint. It looks like a miniature version of the Bledsoe-Leg-Brace-From-Hell, it has dials on it. He wears it on one elbow for 2 hours, then swaps to the other elbow for 2 hours. 2:00 speech therapy was pretty much a waste of time, as his ativan had not kicked in yet. We cut it short by 15 minutes, since Michael kept getting his head caught behind the head rest of his wheelchair. The ativan finally kicked in, and he’s been calm all afternoon. Therese, the case manager came by, and told me they are discharging Michael on September 13th. We are not ready for this, but I guess there is nothing we can do. They have done all they can for him at CHOA, which was to train his parents how to care for him. He has not even learned how to hold his head up straight. I wonder why they asked me what my “goals” were for Michael when we first got here. I guess we’re one of the statistics that will not be going in their marketing brochure. Don’t get me wrong, please. There are some wonderful therapists, nurses, and doctors here. They work wonders for kids that have traumatic brain injuries. Unfortunately, Michael doesn’t have a traumatic brain injury, his is anoxic. Not a lot they can do for him here. Michael has had his shower, and is still nice and calm from the ativan. I hope they send us home with a large supply of it. Dr. J came in and increased the baclofen flow to 360 micrograms. He said he would refill his pump before we left. He also demonstrated the sound of the alarm on the pump. If we hear this, we have to get Michael to a doctor right away. It sounds like a cell phone is ringing in Michael’s stomach. Dr J also discussed Botox shots for Michael’s arms, due to the spasticity. That will probably happen before we leave. That’s it for today. For those of you that pray for Michael, thank you. And pray extra hard for a miracle in the next 2 weeks. Brenda check out the "The Law" page. Tuesday, August 30, 2005 Michael slept well last night, but started getting a little agitated after he was dressed for the day. I gave him Tylenol and then read to him for about 30 minutes. One of these things, or maybe both, seemed to work, he calmed down. The doctors came in to take their morning look at Michael at 9:30 this morning. I pointed out that the spasticity in Michael’s arms is getting worse instead of better. Dr. Johnston seemed surprised, he said they should be getting better with the baclofen pump. He said he would increase the baclofen flow by another 10% today, up to 330 micrograms. He is also ordering elbow splints. Michael is currently keeping his arms drawn up to where his hands are constantly near his face. This could cause a problem – he is wearing hand splints, and when he brings his hands near his face, I’m worried that he’s going to scratch himself again. He’s already done this once, he has a scratch just under his nose. Dr. Gupta flicked his fingers towards Michael’s eyes. He is trying to get a “blink to threat” response. Michael doesn’t even flinch if something comes towards his eyes. Dr. Gupta gave Dr. Johnston a very grave look because Michael still does not respond to this. I was afraid to ask what the look meant, so I didn’t. We had Occupational Therapy at 10:30 with a therapist named David. I like David, he is very gentle with the patients here. He worked the whole time on stretching Michael’s arms, hands, and fingers. He stressed to me that we need to do more range of motion when Michael’s in bed. Apparently, I shouldn’t have been worried about Michael having more surgery. There isn’t any surgery for the hands and arms to lengthen muscles. That’s why you see a lot of kids in wheelchairs here that keep their arms bent back and their hands in “claws”. If we can’t get Michael to relax his arms, they are just going to stay that way. At 12:00 Christie from PT came in to remove the cast on his left foot. She has not been happy with it, and wanted to redo it. After she used the saw to remove it, she discovered that it was damp inside from his shower last night. Oops. That would be the fault of myself and the nurse who showered him. We were so sure that we kept it dry, too. Christie left the room after removing the cast to let everything air out and dry. When she came back, she had decided to remove the other cast in case it was wet inside, too. It was. Oops. Christie is an absolute perfectionist. Which is a good thing. After recasting his right foot, she still wasn’t happy with it. So she re-casted it again. She spent most of the afternoon in our room working on his casts. We also had more bedside OT with John & Lucy. Range of motion on the arms, and more adjustments on his left hand splint. That hand splint is just not working out. He keeps curling his left hand into a fist, and the splint becomes useless. A social worker stopped in to talk about discharge. I put her off until tomorrow. I don’t want to talk about discharge, Michael is not ready to come home yet. When we first came to this place, I was asked what my “goals” were for Michael. I told them that I wanted Michael to walk, talk, eat, and be able to go to the bathroom on his own. So far, we have not met even one of these goals, so I don’t know why we are talking about discharge. When she comes back tomorrow, I will tell her this. As much as I hate being in this place, I know that we need to be here longer. As long as it takes. It never fails to amaze me how I can be pretty upbeat and positive at one moment, and then feel like I’ve fallen into a black pit in the very next second. All it takes is for someone to walk in this room and start talking about taking Michael home in the condition that he is in. Or going to the gym here and learning to use some monstrous piece of equipment that they tell me I will have in my home, to move my 14-year old son from point A to point B. Or trying to imagine how I will bathe him when we get home. I don’t have a shower room or a rubber shower cart at home – or even a doorway that a rubber shower cart or a Hoyer lift would fit through. You’ll notice on the “HEROES” tab of this website that it says that CHOA staff never says "if your child gets better," they always say "when your child gets better." Wish I knew which ones are saying that, because I sure haven’t met them. That’s it for today….hopefully tomorrow’s update will be completely upbeat and positive. Brenda Check out Florida's Alcohol Laws on the "The Law" page. Monday August 29, 2005 Michael slept great last night, so he was very well rested today. I woke up bright and early expecting that we were going to have a full day of therapy. When I first checked the therapy schedule, he was still scheduled as “bedside” therapy. Imagine my disappointment. Drs. Johnston and Gupta came in about 9:00 am. Dr. J said he was going to increase the baclofen flow again this afternoon. The baclofen pump doctor arrived at about 9:30. The pump area is still swollen, but looking much better. The stapled area looks really good, and he said he would take them out sometime mid-week. He also said Michael could get up today for therapy. I got Michael ready for his first round of therapy, which was Physical Therapy with Christie at 11:00. I have not changed his diaper (we call them “hospital pants” when we are talking to Michael) or dressed him since the day before his surgery, 11 days ago. When I left last Sunday, he still had a catheter in place and a hospital gown on. I started getting him dressed today an hour early, since (a) I was out of practice and (b) there are now two casts, a new knee imobilizer, and a surgically implanted hockey puck to work around. It took me about 35 minutes to get him dressed. I’m sure by the end of this week I’ll have gotten good at it again. PT with Christie was light, just range of motion, as was Occupational Therapy with John and Lucy. Michael worked on opening his mouth for Speech. He seemed tired, and it took him a while to open his mouth, although he seemed to be listening intently the entire time. We had a nurse-in-training at all therapies with us. She also accompanied us to the Koi pond afterwards. By the time I got him back into bed, we were almost an hour past his lunchtime water and formula schedule. This is due to the fact that he was scheduled to have bedside therapy, not gym therapy. Brandon and his cousin Trish came in to visit while I was starting his feed. While he was in the middle of his feed, a different physical therapist came in. She started more range of motion on him. I left the room for a quick break, and when I came back in, she had unplugged the pump stand for his formula and moved it to the middle of the room, and was trying to get the wheelchair onto the wrong side of the bed. She then started using the electric hoist to get him into his chair, because he had another round of Occupational Therapy scheduled in the gym. I asked her to lower him back down so I could give him his water through his tube and put some shorts on him. I’m quite sure Michael would not want to go out in public wearing nothing but a t-shirt and hospital pants (diaper). As soon as I got his shorts on him, we started to put him into the temporary wheelchair that we are using while he recovers from his baclofen pump surgery. This is a new kind of chair, for both me and this therapist. He immediately started sliding out. It took us about 10 minutes to get him completely situated in his chair. Fortunately, John from OT came in and helped us out. OT was again light, due to his surgery. John mentioned that instead of being more relaxed since the baclofen surgery, Michael’s arms seemed to be getting tighter, and drawn up more towards his upper body. I was told we need to do more range of motion on his upper body when he’s in bed in his room. We don’t want to have to end up with more surgery to lengthen muscles. Today was Michael’s regularly scheduled shower day. I had the nurse check with the doctor to find out if he could have his shower, as long as his casts were covered, and the answer was yes. I was so glad. He has not had anything but a sponge bath for 12 days. It was WAY past time for a real shower. Michael stayed relatively calm all day, until shower time started to draw near. I’m not really sure how to describe what he was going through….he was not storming, he did not seem to be in any pain….but he was all over the bed, would not stay still. He had a really wide-eyed look and was moving his head from side to side, and banging his casts on the bed. Again, it’s different than anything I’ve seen, because there did not seem to be any pain or distress associated with it. Every day brings something new, seems like. Anyway, I was faced with a choice: let him work his way through it (it went on for over an hour) and he wouldn’t get a shower, or give him ativan so the bath technician wouldn’t refuse to take him to the shower room. I opted for the ativan and the shower. He is calm now, and we are patiently waiting for the bath tech. It was sort of a hectic first day back. I’m sure that tomorrow will be more routine again, because Michael will be scheduled for gym therapy right from the beginning. We are starting to get some heavy rain here from Hurricane Katrina. I think the Koi might wash away out of the pond tonight. -Brenda Sunday August 28, 2005 I arrived back at CHOA at approximately 4:00. Michael looked wonderful – clean, calm, relaxed, and very alert. He was working his mouth a lot – really looked like he was trying to speak. He stayed in this same calm state the entire afternoon and evening. I was so impressed with the way that he was moving his mouth and trying to speak that I had to stop myself from constantly talking to him. Poor kid has to sleep some time! The technician came in and weighed him tonight. He weighed 121.4. I’m quite sure that at least 5 lbs of that is due to the two casts on his feet and the knee imobilizer. Tomorrow, if the baclofen pump surgeon approves it, Michael will go back to full therapy in the gym with his regular therapists. I really hope so. It will depend on how well the incision looks, and it’s currently still very puffy. When I left here last Sunday, it looked like a hockey puck under his skin. Now it looks more like 2 hockey pucks, one on top of the other. He’s sleeping now, not exactly restful. He keeps opening his eyes and jumping at the slightest sound. But he drifts right back to sleep. I guess I need to get some sleep too, we will most likely have a busy day of therapy tomorrow. Goodnight from the plastic couch. Brenda Saturday August 27, 2005 The pulse- ox sensor looks like a band-aid with a wire hooked to it. It is plugged into a monitor that measures the patients oxygen saturation level and their heart rate. It works great unless the patient sweats or moves around a lot. Michael does both. The result of this is that it gives false readings and an alarm goes off. Last night, he moved and sweated all night long. I know this because I can still hear the alarm in my head. He wasn't agitated, he was just moving around. The surgeon came in and looked at the site where Michael's baclofen pump is installed. After poking at it, he used the medical term 'puffy' to describe it. I thought it was it edema, but I didn't go to medical school. So, anyway, the 'puffiness' is getting better and Michael should be able to return to full rehab on Monday. Dr. J came in and turned his baclofen pump up 230 micrograms. He had OT this morning and received some range of motion. He also got his hair washed. That is a very big deal when you are bedridden. We used a blow up sink to rest his head in and poured water on him. He looks good. PT was more range of motion. Got to keep the limbs moving or they stiffen up. Speech in the afternoon. She tried to get him to say the 'm' sound, but Michael was silent. His mouth was opening and his tongue was moving, but no sounds. Michael has been very relaxed today and I can see a lot of Michael in him. I always get encouraged when I see him like this. Mary Jo and her husband (I'm really bad with names) stopped by to see us tonight. Great people. I really enjoyed meeting them. Thanks, guys, stop back by any time. I can tell it is Saturday night, because I start getting a little sad knowing that I will be leaving him tomorrow. He's different, but I still enjoy being with him. Even though he has a brain injury, he still has personality. I moved the storming clip to the 'Stormin' ' section. Did my eyes deceive me, or did someone actually plead "Not Guilty?" Take Care, Dave Friday August 26, 2005 Michael slept well through the night, waking up at 5:30 AM. Dr. J expressed some concern over the swelling around the installed baclofen pump. The surgeon looked at it and recommended that Michael stay in bed through the weekend. He will still get his therapies, just not as aggressive. He did well in speech today and tried really hard to talk again. He opened his mouth on command three times in a row. Physical Therapy went ok, but he really didn’t have to do anything. It was just all range of motion stuff. Occupational Therapy was about the same as PT, range of motion. It is really hard for Michael to participate when he is lying flat on his back. Something new today. Michael’s head has been going side to side pretty much all day, with his mouth opening and closing. Not sure what is going on. As I have learned since his injury, every day brings something new. Increased his water today because one of his kidney tests was a little high. Nobody is overly concerned with it. No storming today and minimal agitation. A very easy day. If you get a chance, I added a new button “CHOA Staff”. Take Care, Dave Thursday August 25, 2005 Michael’s storming lasted until 12:45 this morning. Almost four hours, a new record. When he finally calmed down and went to sleep, I crawled onto the couch and slept. At 3:30 AM, the nurse and tech shifted him around and changed his sweat-soaked sheets. This of course got him started again. We immediately gave him percocet and ativan. These medications combined with the fact that he was tired from the storming he had done just hours before, headed off this storm. Back on the couch for some more sleep. Christie came in at 8:30 for Physical Therapy. She performed range of motion on his legs, and then we put him into a wheelchair to get him ready for Occupational Therapy. This is a loaner chair. It is wider, reclines and looks much more comfortable. John and Lucy came in and gave him range of motion on his arms. He is much looser since he has had the baclofen pump installed. Then it was back into bed. I discussed with the doctors the pain that Michael has been experiencing. That is what we believe triggered the storming. We agreed to put the IV back in so that we can administer morphine as needed. Speech with Michelle was next. Michael was trying so hard to talk. His mouth would open and he would make sounds. He’ll get there, it just takes time. I keep telling him that as soon as he starts talking, he’ll be able to eat, and then we will go to the cafeteria and get a chili cheese dog. If that doesn’t get him talking, I don’t know what will. OT again with John and Lucy in the afternoon. We decided that him sitting in his chair was hard enough for him. Less than a week after some serious surgery, it has to be painful to sit upright. He started getting uncomfortable, so we put him back into bed. The pain began to creep back, so we gave him some morphine. This took care of the pain and allowed him to rest. Dr. J is supposed to increase the flow out of his baclofen pump a little later. He will kick it up to over 200 micrograms. We are looking for a point where the storming will stop and his tone improves. We should find that point soon. Wednesday August 24, 2005, After Michael’s storming ceased at about 10:00 last night, he slept well through the night. The Doctor stopped in this morning and increased the flow from his baclofen pump. This is done with an over sized PDA with a transducer attached. He puts the transducer up to the pump that is implanted in Michael’s abdomen and programs in whatever dosage he wants. He set the flow to 170 micro grams. This morning Michael began to wail in pain, so we hit him with 2 mg of morphine and he calmed down. Serious drugs for serious pain. Michael had his catheter removed today. I know part of him feels much better now. His IV was bent because he kept flexing his wrist. This caused some swelling in his hand and wrist. The IV was removed and is no longer needed. He will no longer get morphine; he will now receive percocet administered through his G-Tube. We got Michael out of his bed and into his chair twice today. We didn’t roll him around, at the recommendation of the nurse. He slept through both chair times. The case manager came in and said that Michael will be back on rehab status tomorrow and therefore we will have our regular therapists back. His therapy will be performed in his bed instead of the gym, but at least he is back on the green team. Nothing spectacular today, but considering he just had surgery on Friday, it was expected. The boy that I mentioned the other day that ended up in the ICU is now back on our floor. It is good to have him back, he really adds a lot to the place. Michael has been storming now for over 3.5 hours and still going strong. He has had percocet and ativan and there is no stopping him. We are trying Motrin, (I'm sure that will work)(sarcasm). We are now trying Beta-Blockers, any bets? We will end up calling the doctor before the night is over. This very long night. One of the reasons that we had the baclofen pump installed into Michael is to help control the storming. They are worse than ever, now. Going to have a chat with the MD in the morning. Now we are into the early morning hours and guess what? Yep, still going. Dave Tuesday August 23, 2005 An early start to the day. I was awakened by the sound of the pulse ox alarm going off at 5:00 AM. His oxygen level had dropped to 87%. He had been on oxygen all night. It was down to .5 liters. We turned it up to 1 liter and his sats went up to 96%. This is probably caused by him being on his back for the past few days. Once we get him up and moving, his oxygen levels should be fine. The pain kicked in at about 7: 00 AM. It is hard to figure out what is causing the pain when his Achilles tendons on both feet and his hamstring has been cut. Not to mention the 4 inch incision in his abdomen to install the baclofen pump. We won’t even talk about his catheter; it makes me wince thinking about it. We tried Tylenol, waited the standard half hour. Next was the Torodol, waited another half an hour. Gave him 1 mg of Ativan, waited again. Another mg of Ativan, and finally, he relaxed. He stayed very relaxed all day. One thing I have noticed since the pump has been installed is that he yawns a lot. I always thought it was the bodies way of getting rid of the carbon dioxide and getting more oxygen into the body. I looked it up, and I don’t think that is necessarily true. It could be that he is just more relaxed. He has been trying to voice again today. The baclofen appears to have loosened the muscles of his jaw, and will probably give him better control for speaking. That’s the theory anyway. Tomorrow we might be able to get him out of bed for awhile, I am looking forward to that. By the way he has been storming for a couple of hours tonight. Ativan, Beta-Blockers, Motrin, and Torodol so far has not stopped it. Gonna be a long one. Dave Here is a picture of the best Physical Therapist in the world. This is the Mighty Christie you have heard so much about. She knows everything there is to know about her job. She puts in a lot of hours here and loves her job. I caught her at the end of the day and she works hard, so this is not a glamour shot. To the right of her are the standers, Michael uses the blue one. This is my bed while here in Atlanta. The back part folds over the seat and gives a whopping 3 feet of bed space. I’m getting sleepy just looking at it. September 13 and 21; court dates, don't forget, I won't. August 22, 2005 Kind of a low- key day for Michael, he is not allowed out of bed yet. He stayed calm most of the day and seemed more alert. Later in the day, he began to act like he was in pain or he was getting agitated, hard to tell which. We gave him Torodol and waited. He became more agitated. Now, normally this would be a bad thing, but today, he actually talked. He said “no” three different times. The first time I asked him if right leg was hurting as I grabbed it. I was shocked when he responded. It took some effort on his part, but he definitely said it. I then asked him if his stomach hurt. As I touched his stomach, he lifted his head off of the pillow, opened his mouth and said “no”. He repeated this again with his right leg. I have heard some of the noise that Michael has made over the past couple of months, and this was more than noise, this was a word. The nurse witnessed this, so I know this happened. He also began to cry, I haven’t seen this is quite awhile. He was crying in response to the pain or frustration he was experiencing. I hated to see this, but reacting to a stimulus is a good thing. We gave him ativan and he relaxed. Now his oxygen levels are low. We are not that concerned and we theorize that the ativan in combination with the increased baclofen flow from the pump is the cause. We will try something different next time. Michael might be able to get out of bed on Wednesday. He won’t be doing any therapy, but we can at least get him out of this room. I am sure that he is tired laying on his back all the time. He might not perform miracles this week, but I have a feeling that he will shine for Mom next week. Dave Sunday, August 21 2005 Hello from Atlanta. My week here at CHOA. Saw Michael for the first time in a week. He had a couple of new tubes hanging out him and a couple of new casts. Hated to see that, makes it seem like we are going backwards, but I know it is a step in the right direction. Last week Brenda came in just in time to see Michael storming. I got here, as his oxygen levels were low. He was put on oxygen to raise the levels. I walked out of the room for one minute and when I walked back in, there was 2 nurses hovering over him. His oxygen levels had dropped even more. Now, Michael has suffered an anoxic injury due to the drowning, the last thing he needs is reduced oxygen to his brain. Of course, I jumped right in the middle and started asking questions. When did he last have ativan? Why did the doctor increase his baclofen and how many micrograms is he getting now? I watch Discovery Health Channel, I know this stuff. They called in the respiratory therapist and she suctioned him out. They do this by putting saline solution in his nose, this makes him cough, and then they suctioned out the stuff. His oxygen levels increased, but then he was acting like he was in pain. I consulted with the nurse and we agreed to try some drug that is between Motrin and morphine called Torodol. This didn’t do much, so we tried a low dose of morphine. This worked immediately. He has to be in a lot of pain and I don’t want to see him suffer. He probably won’t be getting out of bed this week, so no therapy to speak of. It is going to be one long week. One of the patients here is in the ICU. He is really a good kid and he adds some joy to this place. He went through the same procedure as Michael, but he had some problems. If you can spare one, how about saying a little prayer for him and his family. I guess I'll go throw some rocks at the Koi, see you later. Dave September 13 and 21; court dates, don't forget, I won't. Saturday, August 20 2005 It was a rough, rough morning. Michael was in a lot of pain from his surgeries. His heart rate kept hitting in the 180’s, and went past 190 at one point. We started off this day with Tylenol, which did absolutely no good. I am trying very hard not to let him have morphine, because I don’t want him to develop another addiction. We went through that at the first hospital, and it took many weeks and a lot of Methodone to get him straightened out. After the Tylenol, we tried Torodal. After Torodal, we tried Ativan at the recommendation of the nurse. All of this by 9:00 am this morning. The nurse told me that if he didn’t start settling down soon, we would have to use morphine. He was thrashing around so badly, she was worried that he would break open his incision where they installed the baclofen pump. The ativan worked, thank goodness. I can handle almost anything here except watching him thrash around in pain and not being able to tell me what he needs. He wanted to tell me – he had a scared look on his face and his mouth was working almost frantically. About 30 minutes after the ativan, he went to sleep and he has been sleeping most of the day. He wakes up when he’s uncomfortable, and I reposition him in the bed. This is scarier than it used to be, because of the pump. It is under his skin, just below the belly button towards his right side. It looks like someone put a hockey puck under his skin. A new physical therapist with the acute care unit came in about 11:30 this morning and wanted to do range-of-motion on his left leg. I was kind of shocked – they had just cut the left hamstring yesterday. She just did some very gentle lifting, and stopped when it seemed to bother him. She also worked on straightening his toes, which are still bent. This did not seem to bother him at all, so I have worked on his toes myself a few times today. I’m not going to bother his left leg. Today will be my last update for a week, as Michael’s dad comes in tomorrow. For those of you that read these updates every day, and cheer Michael on when he does something that seems small, but is truly amazing – such as rolling onto his back or lifting his arm on command – thank you, from the bottom of my heart. Knowing that he has so much love and support makes me feel that we are not so alone and isolated here. Brenda Note from Dave- Added "Heroes" Button if your interested Friday, August 19, 2005 At 10:00 am this morning, we took Michael downstairs for his surgeries. He had his baclofen pump installed by 12:00 pm, the surgeon came in to tell me that all went well, and they were starting on his tendons, and possibly his hamstring. I met the doctor performing the baclofen pump surgery yesterday afternoon, and signed the release form. He told me I’d be meeting the doctor operating on his tendons later on. I didn’t realize how much later. He woke me up on my plastic couch about 11:45 last night. He apologized for being late, said he’d been in the emergency room, and gave me a release sign to form. I wonder when this guy sleeps. I certainly hope he got some rest before Michael’s surgery. Michael was wheeled back into our room at about 4:00 pm. The entire process took about 6 hours, instead of the 4 hours I was expecting. It was a long day of waiting. He is in bed now with an IV drip, catheter, baclofen pump installed, 2 casts on his feet, and a knee imobilizer. They did in fact have to cut his left hamstring. He is sleeping pretty deeply from both the anesthesia and the morphine they gave him right after surgery. I am hoping for a peaceful night. I’m worried that he’ll be in a lot of pain. I wouldn’t mind if he sleeps until Sunday when Dave gets here. That’s really all I have to report today. I would like to share this letter that Michael received from a lady named Julie. Julie was one of the parents staying here with her daughter, Abby. Abby is 3 years old and had a stroke. They left here yesterday, and I’m pretty certain that Abby still cannot see. She was well enough to leave for out-patient rehabilitation, and before she left she dropped off this letter, and I cannot read it without getting very emotional. DFriday September 23, 2005 A very busy day today. We loaded Michael into our rented Budget cargo van and went to see Dr. Krist at WW Med Center. What a great doctor and a very compassionate person. He let us know that he was a partner in our dilema. He told us that he would be there for whatever Michael or we needed. I have always liked Dr. Krist and today I saw why. We went to have Michael's cast taken off of his feet at Hanger Prostethics late this morning. Michael was ok for the removal of the casts, but started getting agitated when he was being fitted for the AFO's. Brian, the ortho guy said that we could do it in the morning. The place is closed on Saturdays, but yet he is going to help us out just the same. Unbelievable. I figured we had encounters with two great people today, therefore our luck would probably run out with the wheelchair lady. I couldn't be more wrong. She was amazing. She is ordering a stander for Michael. This is a device that will allow Michael to stand up. These things are expensive, but are great to have. She then measured him for his new chair. I have seen a lot of therapists work with Michael, but she topped them all. She knew exactly how to treat him and to talk to him. The way that she soothed him when he was in pain was touching. She was so positive about Michael and his recovery. Today was a Godsend. The people that helped Michael were saints. Maybe God looked down and saw that we needed a little help and sent these people our way. I don't think these people read this update, but if they do, Thank you for your kindness, it was what we needed today. Take Care, Dave Dear Michael, I am writing to you because I had the chance to meet your Dad in the elevator at Children’s Hospital a few days ago and I wanted to let you know how blessed I was by his love for you and that my heart and prayers go out to you and your family in this difficult time. When my daughter Abby and I arrived at Children’s to begin her recovery from a stroke, you were one of the first patients we saw in the gym. Your mom was with you that day and I remember watching her hold your face in her hands and with her face close to yours, she so loving comforted you in that moment. I will forever be blessed by this image as I will be blessed by your Dad’s loving care and dedication to you. I understand just how important you are to them and how they, as I will for Abby, do everything they can to help you recover and live a wonderful life. So I’m sending you a prayer for strength, healing and peace and for your parents I pray that they will also be blessed with the “peace that surpassed all understanding”. May the God who created the Heavens and earth bless you Michael with healing to your body and mind in His perfect timing. May he grant you peace and endurance to press forward towards complete restoration. For your family I pray that God’s light will shine through you and around you to bring truth and resolution to the events surrounding your injuries. May God surround you all with his mercy, grace, and protection all the days of your lives. Lord God, I rely on, cling to and believe in you and I ask these things in your son Jesus’ name. My love to you and your parents. Julie Byrnes Children’s Healthcare of Atlanta is a very hard place to be. Everyone here has sad stories. They have had their children and their lives snatched away from them. I find it very moving that someone with their own tragedy could be so compassionate as to take the time to offer peace and comfort to others. I wish Abby and her Mom Julie peace and comfort as well. Thursday, August 18, 2005 Today is Michael’s last day for rehabilitation therapy for a while. Tomorrow he goes on medical status due to his surgery for the baclofen pump and the surgery for his feet. Since they are actually “withdrawing” Michael from the Rehabilitation unit, therapy seems to have been pretty light today. They combined Speech with Physical Therapy for the first ½ hour this morning. Physical Therapy was a person I had never met, but I have seen her in the Rehab gym. She spent her time holding Michael up in a sitting position, and holding his head back, while Michelle, his speech therapist, placed some personal objects of his on a table in front of him – his toothbrush, hairbrush, CD’s, etc. The first thing she did was try to get Michael to say “hey” to me. She told him to take a deep breath, and let it out with the word “hey”. Michael actually did manage to take a deep breath and grunt. The next goal was to get Michael to reach for his toothbrush or hairbrush, and then use them on himself (with her assistance). He actually did pretty well, he managed to open his mouth for the toothbrush and leaned his head forward for the hair brush. After combination Speech/PT, we had a half hour of PT with Christy. Today’s PT was again teaching Mom to use the Hoyer Sling. Christy is my favorite Therapist, so I wish that it had not been her that I finally cracked in front of. I told her I brought Michael here to learn to walk, so they should be teaching him to walk instead of teaching me to use Hoyer Lifts. Then I shut up and used the Hoyer Lift. I tried the whole time not to cry, and managed not to. I don’t know why that damn Hoyer Lift gets to me. I hate it. By 10:00 we were through with therapy for a while, we didn’t have anymore scheduled until 1:00 pm. Downstairs we went to the now- famous Koi Pond. Here is a picture of it, the only daylight we see while we’re at Children’s Healthcare of Atlanta: Back upstairs to his room, and my Mom read him a couple of chapters of his book. After lunch we went to Occupational Therapy. I was expecting Big John, but like I said earlier, we are being withdrawn from Rehab program so there was a stranger there. She spent the first half-hour taking measurements on his range-of-motion (muscle movements). After the half-hour was up, he started getting a little agitated so we decided not to do the 2nd half-hour. Down to the Koi Pond again. He stayed pretty agitated, so back upstairs we went. When we got upstairs, he started settling in to a pretty bad storm, and I had to call for beta blockers. It took him a good 45 minutes to settle down. I hate that my mom and dad were here for it. My parents are two of the best people you could ever meet in your life. They make this twice a month trip to Atlanta for me, to give me moral support, and a shoulder to cry on if I should need it. I love and appreciate them so much for what they have done. But this is too hard on them. My mom broke down and cried at the elevator when they were leaving. She called me from her cell phone a couple of hours after they left. She actually wanted to apologize for crying. I told her she did not have to try to be such a rock for me. This made her cry again. I think maybe they should not come back to this place. There is enough pain and heartache in our lives now. I am not going to be the one to cause even more of it. I have a few more pictures of Michael. Some are pretty good, some are terrible. I’m sure people look at them and wonder how I could want the whole world to see him as he is. I can understand how they think, because when we first started getting Michael up and around in what is called an Auto Flex Chair at Sacred Heart Hospital in Pensacola, I hated to leave the 3rd floor PICU unit with him. People would stare, and I saw horror and pity on their faces. I did not want Michael having to go through that. But I look at it this way: I tell Michael throughout each and every day how proud I am of him. And I tell him that more importantly, he should be proud of himself. He is working hard. He is struggling to do even the simplest tasks, like lift his arm, or open his mouth. I miss my son as he was, more than you will ever know. There is a hole in my heart that aches, every moment of every day. I miss him as he was, but he is gone. He will probably never come back, not the way he used to be. But I love him as he is now, and I will not hide him from the world. I want everyone to be as proud of him as I am. Brenda Mobley Michael’s Mom A real quick Thank you to the great folks at Martin Signs and Designs here in FWB. They made some magnetic signs for us and donated them to help Michael. Thanks, guys. Past Updates cont. August 17, 2005 Wednesday Michael was not feeling so great this morning. He spent our 9:00 am PT session making his high-pitched noises like something hurts, and calling out a word. We’re all pretty convinced that he’s saying Mom. I’ve been dying to hear him say Mom, but I know he’s asking me to fix whatever is hurting, and I can’t figure out what it is. Our 1st ½ hour session was devoted to teaching me how to use the Hoyer Sling. Since we won’t be bringing home the overhead lift, we will be bringing home this portable one. They tell me that I am too small to get him into his wheelchair by myself, so I have to have one of these monstrosities to get him in and out of his chair. Tomorrow’s session will be going over again what I learned today. I’m not looking forward to it. It’s depressing. My parents will be here for tomorrow’s therapy, and I’ve asked them to come a little bit late so they don’t have to see the Hoyer Sling. On Friday Michael will have his baclofen pump surgery, and then he will be on medical status for 2 weeks. There will be no physical therapy. I would think that they could teach me these things while he is bedridden, not wasting the few precious days we have left for therapy on rehabilitation for the parents. I’m not feeling so great, myself. Yesterday I was full of hope for that he might get better. Today they are showing me our future, which is full of wheelchairs and Hoyer slings. 11:00 speech therapy was a little better, just because he didn’t seem to be in pain anymore. In fact, he wanted to sleep. Michelle, the speech therapist, got him to make some sounds. She accomplished this by waking him up and forcing his head back in the headrest. He hates that, so of course he made sounds. Down to the Koi pond. We stayed there about 30 minutes, and he slept the entire time. Back upstairs for 12:00 water and formula. He slept until 1:00 pm Occupational Therapy. OT was spent working on his hands. His left hand as been tightly fisted and drawn backwards for so long that it is swollen. They put ice on the back of his hand to reduce the swelling, then worked on straightening it out. It is so sore that it hurts him if it is touched. He lets you know right away that it hurts. The thumb on his right hand has a new blister, due to the new 4-hour on splint schedule. John padded the splints to make it more blister-free. Back to the Koi pond just after 2 pm. He slept in his chair for 30 minutes. He slept most of the day, and I have no idea what made him so sleepy today. The only medication he had that would make him sleepy was the beta blockers and he had them at 9:30 this morning. Michael went through a little bit of storm after his shower this evening, and my parents were here to see it. I’m not sure if it was really a storm, or if his leg brace was hurting him. While he was in the middle of this episode, there was a knock on our room door, and when it opened there was a lady holding a gift bag. She introduced herself as Mary Jo. She told me that I didn’t know her, but she had family that lived in the Fort Walton Beach area, and they had let her know about Michael. She wanted to tell me that she was praying for Michael and for us, and drop off this gift bag, which was full of such sweet thoughtful things…snack crackers, candy, magazines, gum, a roll of quarters for vending machines…the kinds of things that make a hospital stay a little more bearable. I was so touched, and I gave her a hug. Because Michael was in the middle of one of his storms, I couldn’t really do more than this. She left, and while I was trying to calm Michael down, I told my dad that I really wish I could have spoken to her more. My dad chased her all the way to the parking garage (thanks Dad!) and got her name and phone number. She told him that she had a cousin Michael’s age who had been through a very similar situation, on the beach, and due to drugs and alcohol. She lives 40 miles from here, and drove all this way. Mary Jo, I thank you from the bottom of my heart for your thankfulness. It’s a little too late to call you now, but I will personally call you tomorrow to hear your story and to tell you how much your thoughtfulness means to us. And I will try to save some of the snacks for Dave next week. Brenda Tuesday, August 16 2005 Last night was rough, but today is a good day. Michael was restless all night long, therefore neither one of us got much sleep. Also seemed like every time I managed to drift off to sleep, either his pulse-ox alarm would go off or his formula feed alarm would go off. Not to mention the nurses and techs in and out all night. I’m yawning as I write this. When I managed to drag myself off of my plastic couch at 5:30 this morning and looked at Michael, he was wide awake. He was frowning and doing his “half sit-ups” that he does quite frequently. He may not be able to walk or talk, but he’s going to have 6-pack abs when we leave here. Something about his face….he looked more like pre-accident Michael than I’ve seen him look in a long time. 10 weeks today, to be exact. Seems like so, so much longer. I asked for beta blockers at 7 am. He was not storming, but very restless, and I wanted to try to ward off an “episode” before 9:00 therapy. I’m so glad I did. 9:00 therapy was scheduled as combination Speech and Physical Therapy. I wondered how this was going to go. As it turned out, they had decided to do the JFK Coma Recovery Scale today. His baclofen pump surgery is scheduled for this coming Friday, and they want to do a “before and after” evaluation. He did really well today. He turned his head to the sound of both therapists voices and looked right at them. He tracked a mirror with his eyes. He showed his tongue on command (with the aid of the therapist opening his mouth for him). He was lying on his back on a wedge, and he lifted his arms on command (halfway – his muscles will not allow him to raise them all the way up). He wiggled his fingers. Both therapists were impressed, and seemed to be very excited. They were not nearly as excited as I was. His overall score since we’ve been here has been an 8. Today it was a 12. I’ve sent along an attachment showing his scores. 9:30 was strictly physical therapy with Christie. I asked her if she wanted me to get his boots and blue leg braces for standing. She said no. It looks like we won’t be attempting standing therapy for a while, it is getting too difficult because his feet are turned too much. We started off with rolling. Christie helps Michael roll from his back to one side. He has to do this 5 times on each side. He tries to roll himself from his back to his side by himself, but he can’t yet. He tries to hand Christie his hand so she can pull him. Again, his muscles will not allow him to raise his hand all the way up. But he lifts it slightly, then she grabs hold of his hand and rolls him to his side. Here’s today’s miracle: Once he’s on his side, he now rolls over onto his back all by himself. Even while wearing the leg brace. At 10:00 am we were done with therapy until 1:00 pm. We spent some time at the Koi pond, and he was really, really calm. However, I find myself longing for the day when he can sit up straight in his wheelchair. When he’s calm, it’s very rare that he sits in the chair and lays his head back in the headrest. He usually tries to lay sideways in the chair, and I spend the whole time I’m pushing the chair using one arm to keep his head straight, so I won’t bang his head into any doorways or walls. They don’t teach you how to do that in Wheelchairs 101. I spent most of the afternoon prior to 1:00 Occupational Therapy reading his book to him. He seems to be listening. I got right into the bed with him and put his head on my shoulder while I was reading out loud. It reminded me of when he was little. We read just like that almost every single night up until he was about 5 years old. I don’t know if it comforts him when I do that, but it comforts me. 1:00 OT with John went okay. John kept trying to hold his head up, and Michael won’t do it. He doesn’t seem to like anyone to restrain his head. He acts the same way when I try to keep him straight in his wheelchair. If he’s going to hold his head up, he’s going to do it when he’ s good and ready, not because someone is holding it. He did tall kneeling and sitting, and rolling. Back to our Koi Pond, then back upstairs. The afternoon has been pretty uneventful, just more talking and reading. I think maybe he’s actually starting to watch the TV a little bit. I keep it on Animal Planet. Therese, the case manager came in. Therese probably thinks that I don’t like her. Not true, it’s just that she always wants to talk to me about things I’m not ready to talk about. I’m not ready to think about home wheelchair ramps, electronic lifts, or Medicare and Medicaid supplements. Can we please just get through Rehab first? I guess that’s it for the day. It’s 4:30 pm, and no storms so far, and no beta blockers since very early this morning. Hopefully the night will be restful and tomorrow will be a good day, too. Brenda August 15, 2005 Started out as a great day today. 9:00 PT with Christy was for Mom, learning to get the wheelchair up and down curbs. I tried this a week ago with a weekend therapist, and failed. Okay, if I’m to be truthful, I didn’t really fail, I just got scared and refused to do it. I was afraid of dropping the whole chair when we went up and down curbs. The amazing Christy showed me the correct way to do it, and it went fine. I can now bring him up and down curbs. She said she would speak to the weekend therapist and teach her the correct way to do it, too. I asked her what it would take to get her to relocate to Florida. She just smiled. We had Christy at 9:30, also. Most of the time was spent on rolling, which he is really getting good at. He can’t start the roll on his own, but he does take over and help go the rest of the way. One thing that I noticed today that he is not doing anymore is turning his head to the sound of my voice. I hope it’s just an off day, he was doing it consistently the last week that I was here. After rolling, Christy took off his knee imobilizer and worked on stretching both of his legs. This was very painful for him. He made a lot of sounds, kept working his mouth – and then – are you ready for this? We think he spoke. It wasn’t quite clear what he said, but both Christy and I both heard what sounded a lot like “no more”. Drs. Johnston and Gupta were watching during this time. They both said it sure did sound like he said something. We had an hour break after this before speech therapy. We went downstairs to the Koi pond area for about 20 minutes. He was tolerating his chair really well. He wasn’t exactly calm, but he seemed so very aware. He was trying to keep his head in an upright position, and when I asked him to pick up his arm which was hanging straight down, he tried to do that too. He definitely picked his arm up, and I helped him the rest of the way. I was very encouraged. Back upstairs in our room, and I kept him in his chair and read to him. I brought one of his older books, given to him by his friend Miss Laura when he was in elementary school. It’s one of the Lemony Snicket series. He did not stay relaxed, moved around a lot in his chair, but still seemed to be listening to me read. Speech therapy at 11:00. Michael worked very hard opening his mouth for Michelle, the speech therapist. She also asked him to take a deep breath and blow it out of his mouth, three different times. He managed to do this for her. Because he was working so hard at doing what she asked, Michelle brought in a cup of ice. She got him to open his mouth for the ice. He did pretty well swallowing when it started to melt. She asked him how he was going to tell her if he wanted more. He struggled to open his mouth and made a whispering sound that just might have been the word “more”. She also got him to wiggle his fingers on his right hand. Just the pinkie and the ring finger moved, but it made me smile. At lunch time he had to have beta blockers. He was getting agitated to the point that his legs were tremoring. The beta blockers calmed him right down. He was almost too calm for 1:00 Occupational Therapy with John. John came in the room at 1:00 to help me get him in his wheelchair. He made the comment that Michael looks much more groomed when Mom is around. (Note: John is easy to impress, Dave. Just brush Michael’s hair and put him in matching clothes.) Michael would not hold his head up while sitting on the edge of the mat. He did sitting and rolling. He doesn’t roll as well for John as he does for Christy. John and his assistant gave Michael’s hands a deep massage, as he keeps his hands clenched into tight fists most of the time. His hand splint schedule changed today from 2 hours on, 2 hours off, to 4 hours on, 1 hour off. I think they are worried about having to cut tendons. They are already going to cut tendons in his legs. They may have to cut the hamstring in his left leg, as well. It depends on how much range of motion they can get when he is under anesthesia for his baclofen pump surgery. After OT, down to the Koi pond. He didn’t want to be outside long today, he would not stay up straight in his chair. Not agitated, just would not sit upright and relax. The afternoon was pretty uneventful till shower time. He was a little combative and vocal during his shower. Very vocal. The kid is trying to talk. When we got him back to bed, I sat with him and talked to him, and I think he was trying to say Mom. Then I tried to put on his knee imobilizer. No luck. The nurse and I tried to put on his knee imobilizer. She pulled on his calf and I climbed in the bed and practically sat on his leg. This kid is taller than I am and twice as strong. We weren’t having a lot of luck. So then 2 nurses and I tried to put on his knee imobilizer, still with me in the bed practically sitting on him. It is sort of on right now, but that wore me out. He was very vocal during the knee imobilizer acrobatics. I think he was saying “No.” Straightening that knee is a physical challenge. I’m not up to the challenge, I am looking forward to the baclofen pump. Started storming around 6 pm. Beta Blockers were administered about 6:30 pm. I’m still trying to hold off on the ativan. So much for his shower, he has been thrashing and sweating for quite a while now. It’s now 7:45. Guess I’ll go see what else I can do to calm him down. Goodnight from room 403. Brenda Hey Brenda, ask John to recite the CHOA mission, tell him it is not "duh?" Dave Sunday, August 14, 2005 Back in Atlanta, Georgia with my son. He was in the middle of a pretty bad storm as soon as I walked into his room. His heart rate was nearing 190, his whole body was shaking, and he was sweating profusely. After hearing all the progress he’s made this week from his dad, you can imagine how devastated I was to see him like this. He had just had a dose of beta blockers, so we waited to see if that was going to settle him down or if he would need something stronger. After what seemed like a very, very long time, but was in reality just under an hour, he finally started calming down. I spent that hour talking to him, trying to cool him down with a washcloth, and trying to get him comfortable. I spent the time after he calmed down unpacking for the week’s stay, and talking to him about what’s been going on at home, and how I heard he was doing spectacular work in the gym over the weekend. He has stayed really calm, I think the storm earlier drained him. He got really sleepy after 8 pm medicines. He fell asleep and slept soundly until 9:30, then the technician came in to weigh him. This is accomplished by putting a vinyl sling under him and attaching it to metal hooks which lift the sling up onto the weight machine. When we rolled him to the side to get the sling under him, he opened his eyes really wide, and looked scared. I could have sworn he was trying to talk. It looked like he was saying the word “Mom”, but no sound was coming out of his mouth. Probably wishful thinking on my part. He weighs 116 lbs this week, so I guess he is staying pretty consistent with his post-accident weight. His weight before the accident was 130 lbs, and a lot of that was muscle. He used to like to work out with weights in the garage. Now that the weighing is over, he is trying to go back to sleep but he’s having a hard time getting comfortable. The good news for the day is that he’s gone another ativan-free day. Dave has set the bar pretty high – 4 days in a row with no ativan to calm him down. I hope this week goes just as well, it’s important for him to try to reconnect without the haze of medications. I just hate so much to see him suffer when he’s storming. I’m looking forward to therapy tomorrow, it always makes me feel better to see him out of this bed. Will let you know how it goes. Brenda Saturday August 13, 2005 Not a whole lot of therapy goes on during the weekends here. It’s a little slower paced. The day started with PT and that went really well. All he practiced was rolling. The therapist was impressed because he would try to do it more by himself each time. He was calm and did not get agitated at all. Next, we had OT, where he did some stretches and got on his belly for a while. After that, he sat on the edge of the mat. Once again, he was very calm. In the afternoon, he had speech, which is almost a waste of time. He really didn’t do anything, but he remained calm. He stayed nice and relaxed until about 4:00. He was in pain, not sure what was bothering him, so I went through my little mental checklist. After Motrin and an hour, he began to storm. We gave him some beta-blockers. Calmed him right down for an hour. Now something is starting to hurt him again. Looks like it’s going to be a long night. I leave here tomorrow, no real excitement about that, I would just soon stay here, I do better here. Attorneys, Sheriff’s, State Attorney, Newspapers, Children and Family Services, Websites, Hospitals, More Attorneys, Trials, Even More Attorneys- I want my life back. Thanks for checking in, keep your kids safe. Dave Friday, August 12, 2005 Michael’s day started early once again. He woke me up at 5:00 by moving around in his bed. He was calm as I put him in his sling and put him in his wheelchair. He was calm on the mat until we put his leg brace on. He started thrashing around and sweating. He continued this until we took the brace off 20 minutes later. He calmed right down. His 9:30 OT went pretty well and with the high standing and rolling. He had a different speech therapist today. She tried to get him to move his mouth and I think he tried. She tried to get him to push a button. It is impossible to tell because he involuntarily jerks every few seconds. She was very encouraging and seem to be sure that he would talk again. She said it would be when you least expect it. I hope she’s right. I call his cell phone once in awhile just to hear his greeting. Not much to it, but at least I get to hear his voice. Looking at his pictures and hearing his voice gets me every time. I need to stop doing that. The afternoon OT with John went well. Just more rolling and high kneeling. He got a little agitated, but not too bad. To clarify this, Michael does not roll on his own, he is sort of pulled and pushed to do so. He had a bath today, and that went well. He didn’t struggle much, which was nice. He sometimes has pain and I can tell it when he starts getting agitated and emits a high pitch noise. All I can do is guess what it is. I think sometimes it is a leg cramp, so I massage his muscles. I wish he could tell me. To see your child in pain and not knowing what to do is rough. The good news is he has not had ativan in 3 days. That’s not to say that he won’t need it, it’s just so far, he’s been ok. It was close last night, but his 8:00 geodon took care of the agitation. Michael received some email from a couple of his friends. One of them is an aspiring rap artist and is actually pretty good. He is going to record a song for Michael and I will post it on the website. It is amazing how many people care about this little guy. It’s very touching. I have enjoyed the week with him and of course I will miss him when I leave. It’s amazing how the love for your child grows regardless what condition he is in. He will always be Michael, he will always be my son, and I will always love him. Kids will make mistakes. Allow them to learn from them, but don’t turn your back on them, they will always need you. Goodbye from Atlanta. August 11, 2005 Another day in Atlanta. Michael slept well and was awake at 5:00 AM. He is an early riser these days. Brenda was right when she said it’s like living in a fishbowl here. No privacy whatsoever. A knock at the door at 7:30 AM and in walks a surgeon to talk about installing a baclofen pump into Michael. Everyone was so impressed with the trial yesterday, that they cannot wait for the pump to be put in. He said he will do it next week, he had to check his schedule. I checked Michael’s schedule and I was surprised that he had next week pretty much open. I had to cancel his tennis lessons, but other than that, he is good to go. (Sarcasm, for those that don’t know me). 9:00 Physical Therapy with Christie went well. He did the blue stander and was in it for 20 minutes. He was very calm and did not sweat much. We talked about his feet being turned in and his left leg being pulled up toward his chest. She recommended surgery. I told her that I would like to get the pump and surgery done at the same time. Christie said she would talk to the doctor. She was all smiles about the baclofen trial yesterday. I have a lot of respect for her. She is an excellent Physical Therapist and seems to know everything about it. If Christie is happy, then I’m happy. Morning music and speech therapy went pretty good. Michael was supposed to push a button when the music therapist got to a certain point in the song. He did it quite often, but I’m not sure if it was a spasm or not. Once again, he was very calm and tolerated his chair very well. Afternoon OT went good, also. Michael did some lying on his belly on a wedge and held his head up for 60 seconds. Minimal sweating and agitation. His new knee immobilizer came in and we put it on him. He seemed to do ok with it. Got Michael back in his room and another surgeon came in to talk to me. This time about Michael’s feet and hamstring. He wants to put him under anesthesia and see how much range he has. If there is not much, he wants to lengthen the tendons and put casts on him. He will talk to the baclofen surgeon about scheduling it at the same time. Michael had very few agitated times today. I have not given him any propanolol or ativan as of yet. Maybe the residual effects of the baclofen have kept him calm. He seems to be in a little pain, this is where we get to play the guessing game. I will try Motrin or something for his stomach. I will try some music and reading with him in a little while, I think he is calm enough for that. Of course, now that I have said that, he will probably storm like crazy. He looks good when he’s calm. I know it is rough on him when he storms, so I hope the baclofen will make those disappear. Tell your kids that you love them and keep them safe. There are evil people out there that can take them away from you as soon as you turn your back. Dave Wednesday, August 10, 2005. Michael had a restful night. He started his voicing in the wee hours of the morning, but was quiet while doing it. He had to get an I.V. at 8:00 this morning to get ready for the baclofen test. It was there in case he had a reaction to the baclofen, they could shoot him with the antidote or something. We wheeled him downstairs at about 8:15 where they have some sort of fluoroscope to help guide the needle in his spinal cord. He was calm right up to the point where we put him on the table and put him on his side. He started getting agitated and of course we had to wait for the doctor. I told them that if he started storming, we were not going to do the procedure, I didn’t want to risk it. That’s when the doctor showed up and I waited outside. He was calm when he came out of the surgery room. Christie came in every hour and performed range of motion on him. She was scoring him on the Ashford Spacisity Scale or something. 0 is the best, 5 is the worst. Michael started out at 3s,4s,and 5s. When it was all over he dropped at least one point on everything. He did not storm, sweat or get agitated throughout the day. He seemed a little tired, but more attentive. OT came in and Michael tracked a light with his eyes. Christie came in and we did the sit, pivot method to get him in his chair. It was much easier without his muscles not being so tight. He sat in his chair without flopping his head. We gave him a bath without having to struggle. Everyone was impressed. They are trying to expedite getting the baclofen pump installed in Michael. Everyone has given approval, even Cigna. It will be surgically implanted in his side and the tube will go back to continuously inject baclofen into his spinal cord. The downside is that our stay will be extended by a couple of weeks. He will be classified as medical instead of rehab, so he will not be receiving therapy during this time. It is worth it in my opinion. The medicine is starting to wear off and he is getting agitated, so I better see what I can do. Dave Tuesday, August 09, 2005. Michael decided to try to find his voice last night starting at 11:00. I got up to watch him for a while (since I was awake because Michael was trying to find his voice) and his mouth and tongue were moving as he was making some noise. It is all part of the process. I wish he would hurry and find his voice, life would be much easier. We would be able to find out if he was in pain or what was bothering him. A storm rolled in at 5:30 AM. It wasn’t on the Weather Channel, it was happening about 6 feet from me. I gave him beta-blockers and that took a little of the edge off. He was still pretty agitated for the 9:00 physical therapy session. Luckily, it was Christie’s time and she is really good with him. He stood in the Blue Stander for 20 minutes. They tried the tracking with the mirror. I don’t know how that went, as my job was to hold his foot in place, so I couldn’t see. His feet are turning inward because he is not walking on them. They will eventually put castings on them to straighten them out. After the stander we got on the mat for some high kneeling and some rolling. He did really well with the rolling. He would try to give his arm to Christie when she asked him to. The 1:00 Occupational Therapy with John went ok. There was some sitting, high kneeling and rolling. Michael was agitated and sweating, so we did not attempt the JFK Coma Recovery Scale again. John and I traded insults and then on to Speech Therapy. After about 5 minutes of Michael flopping around in his chair, we called it quits. I was going to take Michael downstairs to the ol’ Koi Pond, but not when he is agitated like that. I would spend the entire time trying to put his head back in the headrest. We wouldn’t get a chance to see the Koi. Maybe next time, I’ll tape a fork to a broom handle and gig a couple of Koi and just bring them to Michael’s room. Sounds a lot easier. Michael has been agitated pretty much all day. So has his Dad. Michael was put on another medication today, Parlodel (Bromocriptine). It is being used to help control the storming and to help stimulate his brain. He used to be on Levidopa , but the Dr. said that he has seen better results with the Parlodel. Of course, I accused him of prescribing drugs based on which pharmaceutical rep took him golfing. He denied it as he sipped his coffee from his Novartis ( manufacturer of Parlodel) coffee cup. Christie put Michael’s knee immobilizer back on because his left leg is really tight. It takes at least two people to straighten it. Michael has gained some weight. He is now at 117 lbs. He was at 114 last week. Tomorrow is the big Baclofen test, I am looking forward to that . Here is an article about it. Pediatric Neurosurgery, Indianapolis Neurosurgical Group, Inc., IN, USA. TurnerLah@aol.com BACKGROUND: The Food and Drug Administration (FDA) approved the use of intrathecal Baclofen for spasticity from traumatic brain injury in June of 1996 based on a Phase III clinical trial that documented efficacy in patients one year post injury. The FDA approval is only for patients who are one year post injury based on the Phase III study. We have found use of ITB in the first few months after injury very effective in a subgroup of severe traumatic brain injury (TBI) pediatric patients with spasticity, dystonia and autonomic storming following brain injury. METHOD: The author's database of over 250 patients receiving intrathecal baclofen was reviewed. Retrospective chart review was undertaken of the 6 patients identified with brain injuries over a three year period that were given ITB less than one year post injury. The patients' diagnosis included asphyxia, traumatic brain injury and stroke. The ages were one year to fourteen years of age. ITB was offered after all conventional therapy had been exhausted and the patient's spasticity remained intractable. These patients also all experienced autonomic dysfunction with severe autonomic storms. FINDINGS: All of the patients had a decrease in their spasticity of at least 2 points on the Ashworth score. The autonomic storms ceased in all 6 patients when adequate dosages of ITB were reached. The patients could be weaned from all oral and intravenous medications for tone, storming and fever. Many of the patients became much more alert and interactive when the medications were stopped. Five of the six are still using their pump for their tone one to five years post implant, the sixth had the pump stopped at the parents' request for religious reasons. INTERPRETATION: Early use of ITB can play a significant role in the rehabilitation of brain injury in children. Dave Monday , August 8th Hello from Atlanta. Raining here. Michael started the day somewhat agitated, not too bad. Gave him some beta-blockers and he was nice and calm for the morning’s therapies. I wheeled him out into the gym and was informed that today was my day to learn how to wheel Michael up and over curbs. This is something that any parent of a 14 year old should never have to learn. So, down the elevator we go, into the parking lot. I brought him down the curb and up the curb. I passed. Came back upstairs and learned how to disassemble a wheelchair and put it back together. I explained to Christie, the PT, that I have a truck and I was not going to disassemble it. She said that I should learn how in case I used my other vehicle. I told her that my other vehicle was a truck, too. I started to tell her about my motorcycle, but she didn’t look amused, so I took the wheelchair apart and put it back together. Passed that too. Meanwhile, Michael was being worked by another PT. They took off the knee immobilizer from hell and put it on right. Evidently, the weekend crew couldn’t figure it out and it was put on in an unique manner (wrong). I noticed that he had some skin breakdown (a sore), as they were putting it back on. After I got Michael back in bed, I removed the immobilizer and told Christie that it was a piece of crap and that I would prefer the rat-chewed one that she had gotten out of the dumpster a couple of weeks ago. It is amazing that even in the worst of times, I still have my people skills. Michael will be getting a new one in a couple of days. Michael was calm just before I wheeled him into the gym for OT this afternoon. As soon as we put him on the mat, he went wild. So to calm him down, we put him on his stomach. Oh wait, that’s not how you calm him down, it’s how you make him mad. Well that worked great. And as an added bonus, he decided to spit up some of his lunch. So we sat him up. The speech therapist swabbed his mouth with a lemon flavored Q-tip and then massaged his face. We discussed her techniques and I made a couple of suggestions. She pretended to listen to me, so I told her and the other therapists that they were just in it for the money and that somewhere along the line they lost their zest for the job. Good thing they love me here, or there would have been a rumble. Michael stayed agitated, and started to storm, I decided to try some aroma therapy and a ‘Wind Down’ CD, (Thanks Cindi E.) He calmed down for a little while, then I tried some ‘Ativan Therapy’. I am not giving up on the alternate therapies, I just have to try them when he is not storming. He did well in his shower and he is resting comfortably. I took advantage of the downtime to insult the doctors and try to start a riot between the technicians and nurses. Revolution is in the air. I watched him a lot today and he really looks like wants to say something. His mouth moves and he makes noise. The speech therapist said that the voice is sometimes the last thing to come. I wish it was the first thing to come back. The x-ray on his elbow came back negative for calcium buildup, but they want to make sure with another type of test. Wednesday is the big baclofen test. If it goes well, then his tone should decrease and we will consider a baclofen pump. They were going to rate him on the JFK Coma Scale today, but he was too agitated. Couldn't take him to the Koi Pond because of the rain. Besides, his head was flopping around and getting stuck behind the headrest of his chair. I will show him some pictures later and read to him. I will try some of my other alternate therapies and see what happens. You know all the little unimportant things that you yell at your kids about ? Hug them instead. Dave Sunday. August 7th Children's Hospital of Atlanta, Fourth Floor, Room 403 of the Comprehensive Inpatient Rehabilitation Unit. That's Michael's room. To get there you have to ride the elevator past the first floor, which is Surgery, then on to the second floor, Pediatric ICU, and we can't forget the third floor, diabetes and oncology. Remember, all of the patients are children. I hate coming here. I showed up after he had his therapies and just after he got his ativan. He was calm, bright eyed and clean shaven. He looked at me and then at his Brother, Brandon. He almost looks like he can sit up and talk, but he can't. He hasn't said anything in a couple of months. Brenda told him goodbye and kissed him. He looked like he was about to cry. As much as it would break my heart to see him cry, at least he would have been showing an emotion. I have my suitcase full of therapies that I am going to try with him, but I think it will have to wait until tomorrow. Between the drive to Atlanta, the depressing elevator ride, seeing a wheelchair outside of every child's room, and looking at Michael lying in that hospital bed, I am exhausted, physically, emotionally, and spiritually. It seems like this has been going on for eight years instead of eight weeks. Tomorrow will be a better day and maybe a miracle will occur this week. We need one. I don't mean to depress anyone, but this is our world, now. Give your kids an extra hug tonight. Dave Saturday. August 6th. It was a better day. Not the best, but definitely better. Michael did not seem to be too uncomfortable after the G- tube incident yesterday, so the doctor gave the okay for him to participate in therapy. Therapy on the weekends is light anyway, sort of a skeleton crew of therapists here. Not the same ones that he sees during the week. He started out with Occupational Therapy. The therapist was clueless. She kept telling him to pick up some bean bags that she had placed on a table. Obviously she didn’t read his file, he currently does not have any motor skills with his hands. When I mentioned that he had pulled out his G-tube yesterday, she looked at me blankly and said “Why would he do that?” I was so glad when OT was over with. After OT we had a half-hour break before the next therapy. Luckily, he was in a calm mood. Those half-hour breaks are sometimes a nightmare because he has to stay in the chair and I have to keep him from hurting himself if he’s agitated. It would make no sense to put him back in his bed and then have to get him right back up again. During this half-hour period, “Pet Therapy” was going on in the gym. There were a couple of really well behaved dogs there. Michael has been there before for pet therapy, and paid absolutely no attention, even though before his accident he loved animals. Today was a little different. Michael’s arm was hanging over the side of the wheelchair, and a golden retriever was licking his hand. He seemed to be responding to it, his eyes were really wide open. When the dog moved away a little bit, I told Michael to lift up his arm if he wanted to pet the dog. He did it. We brought the dog over closer and I guided his arm to help him pet it. Note: I realize that it could have been a muscle spasm that made him move his arm, but I really don’t think so. I think he wanted to pet the dog. He kept his eyes really wide while he was petting the dog, even though he wasn’t looking right at it. We’re not sure yet how much he is seeing with his eyes. Next was Speech. I had never met this therapist, but she had obviously read Michael’s file and knew his current goals. She spent the session talking to him about his mouth, and trying to get him to open it. He did, once. What’s interesting is, as soon as I wheeled him into the speech therapy room, he seemed to know where we were, and started working his facial and mouth muscles right away. After speech we had an hour to wait before physical therapy, and since he had been sitting in his chair for an hour for Pet Therapy and Speech, I decided to get him back in his bed. I brushed his hair and his teeth, and talked to him about his brother Brandon coming to see him today. He started to seem a little uncomfortable, so I changed his clothes and let him rest for a while. Right before 12:00 pm Physical Therapy, he started getting a little agitated. I got him into his chair via the sling and “air lift”, and went to the gym. His weekend therapist had no plans to give Michael Physical Therapy. What was on the agenda was to teach Mom “Everything You Always Wanted to Know About Wheelchairs But Were Afraid to Ask”. She was supposed to make sure I knew how to put on the brake, and how to go up and down hills. We went to the elevator to go down to the first floor where there is a ramp I could practice on. She kept getting in my way, which was very irritating, and I had to curb the urge to run over her with the wheelchair. When we got to the 1st floor, Michael decided it was time for wheelchair aerobics, so we realized this was a bad idea and went back up to the 4th floor (that’s where we live). Back to the gym, where we got him on the mat, and she decided to teach me how to disassemble and reassemble the wheel chair for car rides. I didn’t bother to tell her, but if my son still needs a wheelchair when he comes home, he is going to have a state-of-the-art chair, not the donated junk that they have at this hospital. That was it for therapy for the day. I started Michael’s water and mid-day feeds when we got back to the room, and managed to hold off for over an hour before asking for ativan. Remember, he had started getting agitated even before going to what passed for Physical Therapy today. He was calm by 2:30, and has been napping on and off for the past couple of hours. Brandon came in during this time. He did manage to open his eyes and listen to Brandon talk to him for a while, but went right back to sleep. Brandon was depressed today, and didn't stay long. It tears him up to see his brother like this. It tears me up that both of my sons are hurting. It’s 5 pm and Michael is waking up and looking pretty well rested. I’m going to go talk to him and try to do some range-of-motion exercises on his arm and leg muscles. All in all, it’s not been a bad day. See you tomorrow. Brenda August 5, 2005 One step up, and two steps back. An old Bruce Springsteen song. And how appropriate when you’re in a rehabilitation hospital with your brain-injured child. I’m still thankful for the wonderful day yesterday. Days like that are rare, and I cherish them. When your life has become one long, waking nightmare, you learn very quickly not to take the few good moments for granted. I have no uplifting stories for you today. I had a sinking feeling from the first this morning that it wasn’t going to be a great day. Michael woke up about 6:30-ish very agitated, and it got worse from there. Shortly before his first scheduled therapy, he thrashed around so violently in his bed that he pulled his surgically implanted G-tube right out of his stomach. There was an open hole in my child’s stomach in the place where I’ve grown accustomed to seeing tubing, which is used to feed and medicate him. I was horrified. It didn’t even sink in for the first few seconds what I was seeing. That’s what shock is, I guess. He had another tube placed. There was no therapy today, the plan for today was to keep him drugged and calm so he wouldn’t hurt himself. They injected die into his stomach and took an x-ray to make sure the tube went where it’s supposed to go. He went without formula or water for the better part of the day until the radiologist gave the okay that the tube was properly placed. When he was drugged and fading in and out of sleep, I was afraid to even sit near the bed and talk to him when he was awake, because I was afraid that he would get too agitated and damage his stomach where the hole was. There weren’t very many periods of calm today, even with the ativan. He spent most of the time beating his head against all the pillows I had propped all around him. Today is Friday, so he was supposed to get his shower. The bath tech saw him doing his head-banging aerobics in bed and refused. I understand. One of the other techs helped me give him a sponge bath in his bed. Did you know I have learned to single-handedly change a fitted sheet with a person a little bit taller than I am is still in the bed? It really can be done. I was also told that it was not possible for one person to move a patient up towards the head of the bed when they have shifted down towards to foot of the bed. Proved them wrong. I climb into the bed with him and pull him up from under his arms. Where there’s a will, there’s a way. All day long I’ve felt like I have fallen down a black hole, and just can’t seem to climb out. I’m tired. Let’s hope for a better day tomorrow. Brenda Past Updates cont. August 4,2005 You know, there is a saying: Yesterday is history, tomorrow is a mystery, and today is a gift. That is why it is called The Present. This saying really hit home with me today, because today was most definitely a gift. After the bad day we went through yesterday (other than Speech Therapy), I would say we deserved it. Michael started out with 2 half-hour blocks of Physical Therapy this morning with Christie. Christie may be small, but she is MIGHTY. I would never have believed that such a tiny person could physically move and lift people twice their weight before meeting Christie. She is amazing. PT went much better today; he tolerated standing, laying on his stomach, and having his hip and leg muscles stretched to what would probably be the screaming point to one of us. He had no problems. I would have liked to see him hold his head up a little better, but what he did do was even better. He is getting pretty consistent about turning his head to one side when asked to. He will look to the left or right almost every single time the command is given. What was even more amazing, was that while lying flat on his back on the mat, he was asked to lift his head up, which he did. He kept it up, then was asked to lay it back down. He followed both of these commands twice, and remained calm and pretty alert through the whole hour session. He was also very obviously trying to assist with rolling over from side to side. Christie was very impressed. At 10:00 a.m. was combination Speech Therapy and Music Therapy. Michelle, his speech therapist, seems to like to co-treat with other therapists. This usually annoys me to no end, especially when she co-treats with Physical Therapy. I mean, how can you expect a brain- injured child to follow the command “Open your mouth!” from the speech therapist while the physical therapist is contorting your weeks- long dormant muscles into painful positions? Please. However, the co-treatment went well today. Michael opened his mouth again, and is attempting to make sounds. The music therapist played AC/DC “You shook me all night long” on her guitar. The goal was to get Michael to make the “ah” sound for the word “long”. Would you believe, he was actually trying to do it?? The mouth was open, and he was struggling. Again, I was amazed. There was also a recorder-type device that he was supposed to hit when the word “long” would be said during the song. He hit it with his fingers. Several times. Not always during the exact right moment of the song, but it was clear that he was aware of what he was supposed to do, and was trying to do it. This is the very first day that I’ve seen him attempt to use his hands. His hands, by the way, were pretty much relaxed all day. Not completely loose, but not the tight fists that I’ve gotten used to seeing. After Speech/Music, we took him downstairs to the Koi pond area. He was calm, and tolerated being in his wheel chair for about 30 minutes. He doesn’t always sit up straight in his chair, so it’s somewhat of a struggle to keep him comfortable. But he was not agitated, he was still, after all this time, and all this therapy, calm and alert. A little tired looking, maybe, but still very much aware of everything that was going on. Back in bed about 11:15, and my parents and I left the hospital for a quick bite of lunch, and a stop at Walmart for an electric razor. Michael is now clean-shaven again, he looks more like the 14-year old boy that he is. Tomorrow, I may get brave with the electric razor and go after the “uni-brow” he seems to be growing. During the shaving, and several other times throughout today, he seemed to give a kind of half- smile. I loved it. It is kind of between a half smile and a smirk. I had missed his big smiles and laughs that he would occasionally give us at Sacred Heart Hospital in Pensacola, but these “half smiles” are really better. The big smiles and laughs of several weeks ago did not look like Michael, but these do. At 1:00 we had Occupational Therapy with John. John may look like Hulk Hogan’s twin brother, but he is truly just a “gentle giant”. He speaks in such a calm, soothing tone of voice to Michael, and encourages him with whatever he is doing at the time. Today’s OT session was very similar to PT, with the exception that he was not standing, but sitting on the edge of the mat with a table pulled up to him. Again, he was not great at holding his head up, but his following of commands is really amazing to watch. Turns his head to the side when asked, and picking his head up or putting it down. Again, he tolerated almost all positions, except propping up on his elbows. He doesn’t seem to like that. X-rays are going to be done soon on his left elbow to check for calcium build up. Back to the Koi pond after OT for about 25 minutes, till he started getting hot. The whole time we were outside, we talked to him about how proud we were of him, how amazing he is in relearning all of the things he’s doing these days. I told him I couldn’t wait to tell his dad what a fantastic day he had, and how proud you would be. I told him you’d be back in a few days, that you missed him. I also told him all the nurses and therapists missed his dad because of how funny he is. I told him I heard all about the “money therapy” you tried – dollar bills all over his chest (C’mon, just one word!”) He listened to me the whole time, I saw it in his face. You’ve seen him in “listening mode”, you know what it looks like. I got one of the half-smiles when I talked about you. Back to bed, and he was still calm up until about 3 pm, then he started getting a little agitated, and his heart rate was going up. I asked for Propranolol (bata blockers). They calmed him right down. My parents left about this time, and I was so grateful for their company, their support, and the fact that they got to see Michael’s wonderful day, and all the progress he is making. Michael took about a 30 minute nap starting about 3:15, and that’s when I started writing this day’s account. It is now almost 7:00. He woke up from his nap agitated. I checked for all the normal things – position in bed, dry diaper. I did his water flush and started his 4:00 feeding, and have been back and forth between talking to him, trying to calm him down, wiping off all the sweat with a cool wash cloth, and trying to write all this down while it was still fresh in my mind. The agitation got worse and worse, and I finally asked for ativan, and he is back asleep, probably for the night. A few hours of agitation is a small price to pay for the all the progress I saw today. When I look at Michael, I still see the same person, with the same personality. He just has a lot more limitations. I see him in his half-smile, I see him when he looks tired, I see him when he frowns. He is very expressive with his eyebrows these days. I can especially see him when he’s in that ”listening” mode. On another front, Therese, the case manager, stopped in today. She told me the most current evaluation for length of stay is another 3 – 5 weeks. They will re-evaulate after they see how he does with the baclavan test. Get this – they might want to actually send him home to recover, then come back here for more rehabilitation. Is that not the stupidest thing you’ve ever heard in your life? I explained to her that my home was not yet equipped to have him come home. She asked me if I had completed the home evaluation, and when I said no, she said to get it completed as soon as possible in case the “team” decided to send him home for recovery. We need to take a stand on this. I am so sick of the rehabilitation-dollar politics that go on here. I am perfectly willing to bring him home with me in exactly the condition he is in if they feel like he’s never going to get any better. However, if there’s more that rehabilitation specialists can do for him, then he needs to stay here for the duration, or go to another facility to see what we can get out of it. I do not understand “sending him home to recover from the baclavan treatment” – what does that mean? Wouldn’t it cost more to fly him home and then fly him back here, not to mention the home set-up that might not need to be done if he can get more rehabilitation here? I am confused and angry. It’s now 8:30. The nurse, David, is in here changing his foot bandage. They weighed him a little while ago, he weighed 114.4. This weight includes the horrible leg brace he is wearing, which I would guess weighs at least 3 lbs. So he is still losing weight. They also tried to take him to X-ray a little while ago, but they had “left elbow” written in the instructions, and I could swear than John mentioned right elbow to me today. So they are waiting until tomorrow to be sure of which one. That’s all I’ve got for now. I really think it was a good day, and I hope this continues, and you see remarkable improvement when you get here on Sunday. Brandon is driving down Saturday and will spend the night with his cousin Trish who lives in this area. So we’ll just take off whatever time you get here on Sunday. I’ll send you another update tomorrow. Have a good one. Brenda P.S. I just read your update on therapies. I never made you stop helping Michael, I just told you were an idiot. August 3, 2005 9:00 am, PT with Christy. Swapped his permanent leg brace (God I hate that horrible contraption) with his original blue leg braces for "standing" therapy. Agitated, agitated. Usually tolerates standing therapy very well, he kept hitting Christy in the face with the back of his head. It was bad enough that she wanted me to give him medicine. I called for the Beta Blockers. Didn't seem to help. 9:30, PT with Kim. Laying on his stomach on the wedge. Still agitated. No yelling, just more violent moving of his head. We started to put his permanent leg brace back on 10 minutes early. Neither me, Kim, or the PT aide could figure it out. We had to call Christy for help. 10:00, speech therapy with Michelle. This I already told you about. Major agitation, but trying very hard to open his mouth for her. Finally did it, both Michelle and I were very excited. She got a cup of ice water and a straw, let him have both cold water and an ice chip. He responded very well, even though he remained agitated. Michelle said it was a good session. 10:30, back to bed. Tried to talk to him and keep him calm for about 20 minutes, finally gave up and called for ativan. He was calm by noon, then got very sleepy. 1:00, Occuptation therapy with John. Too sleepy and tired from both the ativan and his all-morning long agitation to have a good session. Could not hold his head up, did not look at himself in the mirror. 2:00, all therapy over with. Took him in his wheelchair downstairs to the Koi pond. We spent a peaceful 20 minutes there, then he started getting too hot and restless, so I took him back upstairs to his room. He rested from about 2:30 - 4:30. Did not sleep, just rested. I talked to him and did his oral care. He started getting agitated again, just in time for his bath. I talked the bath girl into giving him his bath anyway, told her I'd go with her and hold him down if it got too bad. He really did okay for his bath, other than banging his head around suddenly a few too many times. When we got him back to bed, he seemed calm, then started getting agitated again. My parents arrived from Pensacola just in time to see him really kicking into gear. The heartbroken look on my dad's face is one of the reason's I wasn't sure I wanted them to visit. I assured him that he was getting better, and wasn't constantly like this. His nurse tonight, Jamie, came in and I asked for more beta blocker. She administered the meds and then said she was going to be changing his foot bandages and doing his vinegar soaks on his feet. Since this was going to take a while, she told us to go ahead and leave for dinner. I told her that if the beta blockers didn't work within an hour, he was probably going to need more ativan. When we got back, he was in the middle of one of the worst storms I have seen. Jamie had given him atavan about 20 minutes before we walked back in, so I figured it would be over soon. It lasted for 2 hours. I am exhausted, and I know it broke my mom and dad's heart to see him this way. August 2, 2005 Hi...nothing spectacular since I talked to you today, but I still feel like it's been a great day. You should see this boy FIGHT just to figure out how to open his mouth when asked. It's a struggle, and every part of his body seems to be moving, but most especially his face. When he finally openened his mouth, my heart almost stopped. He tries so hard. He became really agitated afterwards, and his mouth opened periodically. It was really hard to get him to calm down, I think he was struggling to work with his mouth. He knows exactly what he wants to do, he just hasn't yet figured out all the ways to do it. He also seems to be helping to roll over. I start him, or the therapists, and he seems to be taking over from there. I talked to John about the baclavan (spelling?) pump, and he said it would not affect the control he has over his muscles. He seems to think it's a good idea. I still want to see how he reacts to the test before making the final decision. You'll probably be the one here for the test, so let me know. Drugs: Beta blockers at 4 am and again at 12:30 pm. Atavan at 3:30. He is peaceful right now (4:45). I did his oral care while he was calm, but he didn't open his mouth for me or stick out his tongue. Most of the time when he was agitated today, I wouldn't call it a storm. Just him trying so hard to make something work. It breaks my heart, and makes me so proud of him all at the same time. I am still trying to figure out a "yes or no" method. The once for yes, two for no eye blinks don't seem to work. Oh, the medication that you wanted to ask me why they stopped: They stopped it when they started the Effexor. There is also another one that they have been giving him at night to calm him, I can't remember the name, I'll have to ask. Apparently it's been given for a while, but they didn't put it on the print-out in his room. I better get back upstairs, I've been down here for a while. Talk to you soon, Brenda August 1, 2005 Good evening from Atlanta, Georgia. Last night was pretty good for Michael. He sure is trying to find his voice. Noisy little tyke. They say that people with brain injuries are sometimes alert in the wee hours of the morning. Michael is no exception. I can tell he’s awake at 4:00 AM because I wake up throughout the night to check his pulse-ox monitor. If his heart rate is in the 90’s he is awake. His resting heart rate is usually 50’s thru 70’s. He is lying there, eyes wide open, thinking about something. I hope they are good thoughts that is having. This morning’s therapy was setup to train the parent (me) to perform range of motion exercises on the lower extremeties, we simple folks call them legs. Then, I was supposed to do the “sit pivot transfer” from his chair to the mat. That’s where you basically lean over, grab him, pick him up and move him from the chair to the mat. The pregnant therapist did it, so I figured I would have no problem. Unfortunetly, he picked this time to lock his leg, (lower extremity to you college educated folks), and as I lifted him, the chair was coming with us. Not to be outdone by a 110 pound pregnant girl, I refused to set him down so I held him with one arm while trying to unlock his leg with my other hand. It might have worked if I was not wearing flip-flops. Long story short, preggo had to move Michael. I didn’t get signed off on this task and will have to repeat it. This afternoon went well. He held his head up pretty good. They do not have any cool things to stimulate someone of Michael’s age. They tried a little toy that played “You are my Sunshine” over and over. Michael was supposed to shut it off. He didn’t, so I did. Then we had some laying on the belly action. Michael was quite miffed by this and expressed his feelings by making fists and screaming. The speech lady made a visit to our room, but Michael was not in the mood. She tried to do some oral care, but Michael didn’t want to play that game. She left and Michael stormed. Check back when you have the time. Take care. Dave |
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