October 1, 2002
Jason has had a good day, some temps and heart rates above normal, but otherwise pretty good. He has his new Spring-Loaded splints, for his feet, they are very hi-tech. Should be interesting to see how they work out.
His echocardiogram came back negative, that's good, but they want to do another procedure on him. I believe it's called a TEE (don' t remember what it stands for) but at any rate, a brightly lit scope is put down his esophagus and the doctors can get a very good picture of the valves in his heart. They just want to see if there is any infection the valves. If so, he will be put on a special antibiotic for that. That will take place tomorrow (Wednesday).
The chest x-ray came back as showing improvement. Great news and one step closer to MCH.
We introduced ourselves to his new Doctors (rotation, Strong affiliate remember) and told them of our concern that he may have flattened out as far as being more alert or aware. They said they would review everything and take corrective action. Pushed them to make the wrist normal instead of fusing the bones together. We asked them to put together a scenario of what happens doing it both ways, from start to finish, so we can understand it better. We're not giving up here yet.
October 2, 2002
Jason had a minor set back today, they could not perform the TEE (the scope for the heart valves). He was having spasms. Go figure for someone who has been in a coma for as long a time as he has. There is talk of trying something else.
He is still spiking a temp and having heart rate problems. His pneumonia seemed better. He is resting peacefully now.
Tomorrow is another day.
October 3, 2002
Well we are not sure exactly what is going on with Jason but here is what we know. The blood work is indicating that Jason's kidneys are not completely doing their job. Some toxins are not being filtered out the way they should. Not sure if it is because of the antibiotics, pain meds or something unrelated. They (the Drs) are reviewing all his intakes to see if there could be interference there. They will run more blood work and have increased his fluids. They are keeping a close eye on it.
Jason has his new splint for his right hand, the one that is broken. Hopefully this will help that hand until surgery can be done. So now he has all his splints. His range of motion has tighten up recently and we are not really sure why. We have expressed to the Drs that for the past 5 to 7 days he has been low key and not as alert as he has been. He has been posturing more recently as if he is very uncomfortable.
Keep pulling for him, he needs all the support he can get right now. Thanks.
October 4, 2002
OK so now he may have a viral pneumonia and not a bacterial pneumonia. No antibiotics. He has had slight temps up to 102 but his heart rate has been better. Still real groggy but we have encouraged the nurses NOT to give him pain meds unless he absolutely needs them. Usually when his heart rate is above 130.
Kidneys are looking slightly better. Drs said that the problem may have been due to long term use of antibiotics.
If his cultures come back negative they may consider moving him to MCH early next week.
October 5, 2002
Jason is having a fair day, eyes open more. Still has temps. Heart rate around 120.
Infectious Disease Drs visited Jay today, specialist in fevers. They believe that the fevers are injury induced not because of infections. They will keep an eye on him, without antibiotics and run cultures to keep track of any possible infection.
His kidneys appear to be normal. Great news. Will be watched closely over the next few days.
Jason is having a fair day, temps are up (103.6) but his heart rate was down (106).
His kidneys are fine according to the doctor. His lungs "sound good and equal". The left lower lobe sounds near normal.
Jay was more alert than the previous week. Still has a temperature but his pneumonia is getting much better. When the Respiratory Therapist "cupped" his back he did not cough up as much as he normally would. He said that Jay is getting much better.
Good day though I think Jay was sad that the Bills lost but was happy to see Little E win.
October 7, 2002
OK, some good news. He still has fevers and heart rate problems however the DR's say it may be a part of life for Jason from now on. So why is this good news? Well... if his infections are gone, for the most part, and his heart rate can be controlled by medicine then there isn't any reason that he can't be moved to MCH for physical rehab. And that is great news!
Jason has been more alert today than yesterday and that day was good. His extremities are much more limber than they have been. He has a new hand splint, for the one that is broken. His leg splints and all the work that the PT and OT therapists and all the visitors have been doing with him are helping. The PT asked him to move his right arm and he appeared to do so. He also yawn and we heard his voice for the first time. He is ready for Physical Therapy more now than ever. TIME to MOVE.
I know we have mostly talked about Jason's physical health and not much about his mental health. The main reason for this is that we just did not know. Mostly because of pain medication which had made him groggy and out of it. We believe that Jason knows when we are in the room and that he can hear us talk. Some think that he can respond by blinking or raising his eyebrows or moving his arms, legs or toes. Who's to say. I believe that Jason will come out of it more and more as time and physical therapy goes on, that's why the push to get him to Monroe Community Hospital for physical therapy. I do believe that Jason can understand some of the things that are said to him. He seems very frustrated that he cannot respond to the point that we understood his response. I think that he gets so frustrated that he will even close his eyes as to not deal with it. He has been at a point that is barely out of a coma but I think now with less pain medication we will see a greater improvement. Keep praying for him, he needs all the support he can get.
October 8, 2002
Jay had a so so day. His pneumonia is a little worse, think he needs an antibiotic again.
Fever the same and his heart rate was down a little.
He is pretty limber though, PT and OT therapists have helped quite a bit.
Bite his lip again, does it when he has to cough, can't get it out of the way when he is done.
No word on the move yet, waiting for the cultures first I think and then go from there.
October 9, 2002
Jason had a good day today, more alert. Still some temps, heart rate near normal, pneumonia not as bad. He was still pretty limber. Still likes to sleep a lot. Not sure why except the fevers will do that and his pain patch may be causing some of that as well.
We have not been able to talk to the DR's today but we have heard that the cultures came back normal and that he may be able to move to MCH by Friday. That would be great. I will try to meet with the DR's tomorrow morning to see if they can confirm this.
Respiratory and the OT say he is doing great.
October 10, 2002
Great news!!!!! He is being transferred to Monroe Community Hospital this afternoon!!!!!!
Will update later today.
Didn't happen, snafu on the MCH side of things. The transfer will happen tomorrow at 9:00 AM.
Still has spiking fevers but otherwise looks pretty good.
Packed and waiting.
October 11, 2002
Well today was the day! Jason is at Monroe Community Hospital, 1 Friendship East, Room 18.
Different to say the least, some good some not. I guess if you are not prepared for this place it can be quite depressing. But we are extremely happy he is there. He is on a floor for young adults, some of which have had problems since birth, others are accident victims like Jason. This is considered a long term care facility for him, so the hospital encouraged us to make his room look just like home with many pictures of friends and family and vacations etc. If you have any photos to share, please bring them when you visit. The visiting hours are from 11:00 AM until 9:00 PM.
Jason will be getting a schedule for physical, occupational and speech therapy next week. We've been asked to be part of his therapy sessions. There are rest times for him, but we are unsure of the exact times right now.
He was in a wheelchair today and we moved him into a game room, where he seemed to be watching the traffic on E. Henrietta Road and watching Robbie play Nintendo.
He has his own TV and stereo in his room and he seems very comfortable there.
To our dear friends at Highland Hospital and ECMC we want to say thanks for helping us get here! At ECMC, Francine, Janie, Beth, Karen, Nicole, Renee, Leslie, Regina, Michele, Michele, Michele, Betty, Ann, and our other friends who we missed. At Highland, Wendy, Beth, Lisa, Suzanne, Amy, Anita, Linda, Sue, Doug, Jackie, Respiratory and Physical Therapists and all of the other student nurses and again other friends we missed. Please know if it wasn't for your love for what you do and kindness, Jason wouldn't be here. We love you all.
October 12, 2002
Today was Jason's second day in his new place. He seems very comfortable and that is what the staff at Monroe Community strives for. His room is full of the things he loves including his own after shave and shampoo, pictures and posters, his own TV and DVD player and stereo.
He ran a temperature of 102 again today, but that will probably be a daily happening, but his heart rate remains good. He was in a wheelchair for about 4 hours and went to the game room again. He kept lifting his head up and we would put it back and then he would lift it again. It looks as if he's trying to move around for himself.
He gets fatigued very easily and even getting into the wheelchair and down the hall really seems to tire him out.
Hopefully Tuesday they will begin to work on his schedule for therapy.
October 13, 2002
Jason was up and down to the game room early today. His heart rate was in the 80's!! and he was looking good. Temp was at 100.2, not bad for Jay. Wide awake, so I guess the time to visit is early, otherwise he tires quickly.
Big week coming up. All the different teams to evaluate his current condition and where to go next.
Update: Jason was watching Chris play video games and then watched the Bills game and race on and off. He had higher temps today, up to 103 and was sweating quite a bit. His heart rate was up to 148, but his oxygenation was at 99%. Respiratory only suctioned him twice and not much came out. They said he sounded really good. He didn't cough too much today.
October 15th, 2002
I know I know, no update yesterday. But it was about the same as the day before so I didn't see much point. Wrong.
Well today he met with the OT the PT therapists (Mark and Lisa) and the Speech therapist. They asked a lot of questions and will do an evaluation over the next couple of days and come up with a schedule.
The speech therapist tried several things on Jason seeing what would generate a reaction. He reacted to several different smells and tastes and some vibration around his mouth and neck. May have actually grinned at one point.
Still pretty sleepy but they all said that was pretty much normal.
October 16, 2002
Had a chance to visit Jason around lunch time and he was getting his teeth brushed at the time. His eyes were wide open! I think between the fresh taste in his mouth and the fact that someone was putting something in his mouth made him very alert. It was good to see him like that. He was looking around and was focused in on you when you talked, even if it was only for a second or two.
Temps were up and down, high just over 102. They are alternating Tylenol and Motrin every 4 hours which is helping quite a bit. We had a chance to talk to the nurse practitioner, Sarah Dalton, she said that they would cut his pain medication, now in a patch form, in half and then keep a close eye on his heart rate and alertness. This is great news as now he may be more alert than before. We are hoping that they control the heart rate by other means and not narcotic pain medication. We will just have to wait and see.
October 17, 2002 OCTOBER....where did the summer go???
Jay looked good today, only had his eyes opened on and off throughout the day. Speaking of which...When I was leaving last night I said goodbye to Jason and told him I would see him the next day. Of course he had his eyes closed for about the last hour I was there as it was. I walked half way down the hall and realized I had forgotten my drink. I went back and there Jason was with his eyes WIDE OPENED! I talked with him a bit and of course he closed his eyes again and would not open them. I walked out into the hallway where Jason could not see me and waited a few minutes. I walked back in and AGAIN he had his eyes wide open. If I didn't know better........
Jay had his food intake increased up to 60 from 50. Just numbers but 40 is the max they usually give him. He was at 80 (the max on that type of food product) at Highland and then went to 40 because they used a food product that was twice as concentrated. Being at 60 on the 2x stuff I guess they are trying to get him to gain weight. Sarah says she likes that because she likes Jason fat. Go figure.
The respiratory therapist said his lungs sound better.
October 18, 2002
Jason set off all the alarms today, he had a fever of 105 +. He was in good shape when we got there, temp was coming down, respiration was slower and heart rate was good. Put a good scare into everyone, reminding us that there is still a problem. They put him on antibiotics in anticipation that there was still an infection. Cultures were taken and the results will be tomorrow and the next day.
One good thing that came out of this is that Jason got his first shower in three months, even if it was a cool one. It had to feel good. He seemed to like it as the nurses said he was relaxed.
October 19, 2002
Sarah, the Nurse Practitioner, came in and said he did have pneumonia back in his left lobe. They are treating him with two antibiotics and Tylenol and Motrin and she has increased his respiratory to three times a day. They are also giving him a treatment. Before we left the respiratory said he sounded really good. He said it is very tough to get rid of pneumonia because you have 3 million pockets in your lungs which can grow bacteria and he has a harder time getting rid of it.
The nurse said this morning that he had a good night. His temp was 98.
Temps were still good and he was more awake than before. Things may be looking up!
Frank and Becky's wedding was a blast with a special recognition of Jason. Choked me up!
October 20, 2002
Jason looked good today, no temps, everything right where it should be. Very alert and tracking with his eyes when he was awake. Still think he is playing peak a boo but he does need his sleep. Respiratory and the nurses said he sounded good.
We attended the fund raiser for the Cowdery's tonight. The place was bussing with activity. Great people and a good time for a good cause. Food was excellent. Our hats are off to the people that supported and sponsored such a wonderful event, great job!
October 21, 2002
I don't think Jason has ever been more alert. His eyes were wide open and he was listening and following your voice. He appeared to look at things that you held up in front of him. Still not sure what he comprehends but he is much more awake.
I had Jason all to myself tonight and it was a nice time. He kept me busy though, soaked pillow cases, soaked gown, soaked bed sheets man oh man ya think I was his maid or something. Somebody had cleaned up in there (his room) and I had a hell of a time finding anything. Eventually did but they made me work for it. The hardest thing to find were his glasses. I looked all over the place and finally found them in all places but his eye glass case on the shelf. GO FIGURE.
Now that he is more aware of his surroundings I can tell that he is going to be more uncomfortable. He will feel more pain and discomfort. I just hope it doesn't make them put him back on pain meds. Otherwise we are going to be in a vicious cycle. Now the problem will be his right wrist WHICH IS STILL BROKEN AND DISLOCATED! Here we go again. We have got to get this one resolved.
I also noticed that he was in discomfort and was trying to figure out what it was. His right arm was pushing down so I re-adjusted his pillow so it would not touch anything. He was still uncomfortable. After looking around a bit I finally realized that his feet were touching the footboard of the bed with moderate pressure. For some reason he hates that. His respiration was up and so was his heart rate. As soon as I pulled him up on the bed more so his feet weren't touching anymore everything started to calm back down. Great, after all this I made him so comfortable that he decided to go to sleep.
October 22, 2002
We went to the hospital thinking we were going to be trained on how to maintain his trach but something was not scheduled right, respiratory and speech therapists showed up at the same time. That was interesting. But we learned a lot and will have another session set up in the future.
His temp was quite high today, back on the Motrin and Tylenol again.
We have a meeting set up for next Tuesday to discuss his progress and where we go from here.
Playing peak a boo again.
He was still running a 105+ temp. Bathed him with cool water and the nurses finally put ice on him. His temp was way down by the time we left.
The nurse was really giving it to him tonight, trying to get him to respond. I think he was just giving it back to her by clamming up. Tight lipped and refusing to open his eyes. Even tried to brush his teeth, which he usually likes, but no deal. I think when he doesn't want to be bothered he just keeps his eyes closed. On purpose, of course.
Glad its not just me.
October 23, 2002
An update of a different kind. I did not get a chance to see Jason yet today BUT we did get to visit LISA. Lisa Cowdery is at St Mary's Hospital. http://www.angelfire.com/stars4/cowdery/ What a treat! It was real uplifting to she her progress. We got to visit her all by ourselves and she had us hopping. She first wanted us to "break her out" of her bed, so we went to the nurses station to find out how. They got her into a wheelchair. She then wanted to go anywhere, so we went down the halls. She got a new cast yesterday and doesn't like it so we drew a heart and signed it. She liked that a lot and thanked us for everything all the time. Most importantly, she was very hungry and sat by the doorway of her room waiting for her "food" as she called it. Yesterday, we were told, she ate TWO trays of food. We sat with her while she ate and when Rob said "boy that sure looks good," she looked at him and said "do you want some?" He said no thanks then she looked at me and courteously asked "how about you, do you want some?" It was hard to leave her, she is a true gem and to see the way she has worked so hard to come this far is very uplifting for us to know that Jason can and will get there too.
Jason's temp was under control today, very alert. More to come...
Jay seemed uncomfortable and his respiration was up, his heart rate was at 139 and his temp was around 100.5. Other than that he is doing fine. The respiratory therapist said he was fairly clear.
I think we just need to get the wrist fixed and take some if not all his discomfort away.
October 24, 2002
No temps today. Still having some trouble being uncomfortable. Tensing arms and right leg. Could just be his wrist or something else that may have been missed on a x-ray. Speaking of x-rays he had some more taken on his feet. Just to make sure there are not any other fractures. Wouldn't be surprised if we don't see more in the future. Left arm or wrist maybe.
He cough up quite a bit tonight, we can only hope this is good. He was pretty tired about 8:15 or so.
I heard he was playing peak a boo with Joanne this afternoon. She had left (he was a sleep) and came back for something and low and behold he was wide awake, so its not just me. Hahaha. I think he plays this when he just doesn't want to respond any more.
He looked wide awake and followed with his eyes. Looking good.
Sarah, your hair looks great!
October 25, 2002
Well more bad news. Jason has 3 broken bones in his left foot. Not sure if they are new or old but suspect that his foot was broken all along.
He looked good today though you could tell something was bothering him. Now we are starting to realize just what.
Temps were good. Respiration was up. More to come.
Time for Orthopedics to step up to the plate.
October 26, 2002
Jay was doing so so today. He was sleeping more than he was awake. Now his left hand is swollen. We may have to ask them to x-ray this hand as well. The Respiratory Therapist said that his pneumonia was just about cleared up. Temps were pretty good today.
October 27, 2002
When arriving at the hospital the nurses asked if I wanted to take Jason out for a walk. Of course I would. I took Jay outside to let him feel the cool breeze on his face. I think he loved it. We didn't spend too much time outside as the girls showed up when we got outside and started complaining about how cold it was. So after a while we went back inside. I think Jay liked the sun hitting his face, something he hasn't had for over three months.
Temps weren't too bad today, respiration was up a little and no oxygen! He has been weaning off the oxygen for several days and tonight they were going to leave it off to see how he does overnight. Another step closer to getting rid of the trach.
October 28, 2002
Jay seemed pretty good today, temps weren't bad, respiration up a little. Had a chance to take him out for a stroll but ended up missing his speech therapy. But he did like it outside.
X-ray came in to take picture of his left wrist and hand.
No oxygen today but he needed the moist air as he was starting to whistle.
Man, when they said it would get worst before it could get better, I just didn't expect this. (Jason's Stats)
Jason now has a broken left hand. This is getting very hard to understand. Not sure what has gone wrong.
He, obviously, is in a lot of discomfort.
We meet with the head Dr and Nurse tomorrow. Should be interesting.
October 29, 2002
Jay looked good today. Still has some pain issues, low fevers but otherwise doing well.
We had a meeting with the Dr and staff at MCH today. All we can say is that we are very disappointed with the Medical and Insurance fields. As it stands right now they are not fixing any of his broken bones. This is due to the fact that; he cannot respond, that with the fevers and pneumonia, there isn't a reason that an insurance company would allow for surgery to take place at this time. We asked to speak directly to the Orthopedic surgeon.
Jay had a slight fever and was sweating up a storm. He was pretty mellow tonight, like he had a rough day or something. Still no oxygen but he does get moisturized air mainly at night.
When we left he was the most relaxed I have seen him. Both arms relaxed at the elbows, both legs slightly bent at the knees. Absolutely no posturing. Even with the broken hands and feet, he looks like he is improving. His weight seems to be steady if not gaining a little.
We have an appointment with the Orthopedic Surgeon next week.
October 30, 2002
Still trying to cope with the meeting on Tuesday, just haven't sorted it all out yet. Sorry for the delay in posting the update.
Jay had a pretty good day considering. He had a walk (wheelchair, lets not get carried away) outside today, oops what happened to the feeding tube.... He seemed to enjoy the wind and sun. He also went on a tour of the ground floor later that night and was enjoying the salt water fish tank they have built into the wall. He is rotating his eyes more and more to the right than before.
He started running a temp, 103+.
Wasn't very active for the speech therapist. Kind of gave her the cold shoulder. Other than that pretty fair day.
October 31, 2002
Jay is all decked out in his Halloween pants. Looks good. Took him down to the cafeteria to see if all the smells would spark some kind of response. Didn't happen but he was pretty tuckered out for some reason. He was running a temperature of about 104 today. They were running cultures to see if something was going on. The respiratory therapist said they could not get very much up. But then they noticed that the heater for the moist air was unplugged so that might account for the dryness. He is still off the oxygen but needs moist air because of the trach. He is moving his eyes more than normal.
The Speech therapist said he did well (alert) for more than 45 minutes, probably a record for Jason. That's improvement.
Jason will still tune you out when he wants to, the little snot!