September 1, 2002
Jason had a fair day, temps around 101. Seemed to be moving around, lifting leg, moving head. Still out of it as he was getting pain and sedative medication. Still able to cough up quite a bit.
He is moving back to the 7th floor, room 757 this afternoon.
Jason is doing OK tonight, still has a temp (103) and still appears to be in some pain. Usual meds. His room is smaller than before but still has a view. Coughed up quite a bit of junk. Still moving around a bit.
September 2, 2002
Jason had another couple of temps today up to almost 104 and 150's for his heart rate. They are alternating Tylenol and Motrin and his fever finally broke. They also discontinued his antibiotics. The nurse also gave him some pain medication for his heart rate, which he hadn't had since Sun. morning. His lungs are almost clear and when they suctioned him today the sputum didn't look too green anymore. He was pretty tired most of the day and wouldn't open his eyes a whole lot. He is bending his arms at the elbows more now.
We are praying that he gets moved to Strong Memorial tomorrow. We will keep everybody updated and let you know about visiting hours.
September 3, 2002
I've been reprimanded.
Now for the update. Jason is doing better. He still has temps and was put on a cooling blanket. His temp was down below 101 when I left. He looks better, though he still looks troubled. Not sure but when I talked to him about his girlfriend I thought he shed a tear. He opened his eyes and was looking around for a little while. Not sure if he was able to focus, actually thought he was watching Pamela Anderson on TV, but not sure.
Talked to the social worker, she said Strong's DR and ECMC's DR need to have a conference call to discuss level of care before he can be transported. Hasn't happened yet, go figure, but should sometime this week. Keep your fingers crossed.
Rob (Lisa, keep fighting!!!)
September 4, 2002
Jason is still at ECMC, no beds at Strong yet. We working very hard at getting him there.
He had another 104 temp last night and 103 today. He was on the cooling blanket most of the night and day. It finally broke about 6:00 tonight. The Doctor put him back on an antibiotic.
He finally had physical therapy today. The therapist was very impressed on how loose his hands and arms are becoming, that he isn't as tense as he has been. She said he hasn't lost any range of motion in his arms and just his ankles are starting to tighten up.
Jason is coughing up the stuff in his lungs really well. His lungs are getting so strong. When he coughed tonight he actually opened his mouth almost every time.
He had his eyes opened in and out during the day, but really opened them up around 6:30 p.m. and they were still open when I left.
He got a shot for pain tonight and hadn't had any since yesterday.
Keep praying for us that he gets moved quickly!!
September 5th, 2002
Jason is somewhat better, still battling temps of 102 - 104. He was moving his left arm some. Seemed more relaxed. Opened his eyes some.
After getting the go around all week it seems as though Jason may be transferred to Highland Hospital tomorrow! Keeping our fingers crossed.
Joanne and I had to come home early as our dog Sammy is not doing so well. She may have to be put down. She is a German Shepard about 16 years old.
When it rains it pours.
September 6th, 2002
Well, what a day! Jason is finally home, Rochester that is. He was transferred around 1:00 PM. Had a nice ambulance ride, no problems. He is now located at Highland Hospital, 5th floor room 516.
He now has a whole new set of Doctors and nursing staff which will help him in his recovery. He has settled in nicely and has a great room.
He was still running a temperature but not too high. He has a problem with his feeding tube but they hope to correct that soon. Hope so because he hasn't had any food since Wednesday.
Other than that he looks good.
Jason looked good. His temp was down and he had his eyes opened more than 7 hrs. He was looking around and appeared to be following with his eyes. He really likes a minted swab with some water on it. He actually opened his mouth to get some of it. You have to stop and think, wow he hasn't tasted anything for over 7 weeks other that his own fluids. You can just imagine what a treat it must be for him. Starting to get some food again as his feeding tube has been giving him trouble. He has lost a lot of weight.
We think he likes it better where he is now as he is more responsive. Still around an 8 on the coma scale but we believe that will change very soon.
Thanks for the prayers and thoughts, especially Buck, Bubba and Kandi, and a special thanks to Millard, Pat, Jason, Sarah and Bridget. At your time of need, you all have been so supportive.
Sept 8th,2002 Sunday
Jason had his usual temps but Tylenol seemed to hold it down. He is being fed through his feeding tube but at a much lower rate. They will gradually bring it back up. He was alert at times and seemed to respond. The nurse told Kris that he was at a 10 on the scale.
Jason seemed agitated for some reason, we think it may be his right wrist. The doctors should be looking at it tomorrow. Hopefully they will fix whatever is wrong so Jason can concentrate on getting out of the coma.
We put his sneakers on to help keep his feet straight. He acted as if he liked that.
He received a shot for pain, much to my dismay. He was asleep for about 3-4 hrs because of it but hopefully it did some good. He was not as alert today as he was yesterday.
Sept. 9th, 2002
Jason is still battling fevers but they decided to take him off all antibiotics for now. If the fever persists then they will put him on Tylenol for a couple of days as well as run a complete set of cultures. (Still think it is injury induced)
He was out like a light today because he had cat scans and x-rays. They had to give him more pain meds to get through it. So he was resting peacefully.
We asked them to take a good look at the right wrist x-ray as he was showing quite a bit of pain when anyone messed with his right fingers.
We will update you when we get more.
He was more alert this evening. When Matthew belched Jason seemed to have a smirk on his face. Someone else cracked a joke and again he had a smirk. Jason should get more x-rays tomorrow and we will see what comes of it. He still has a temperature. Still appears to be in some pain every now and then.
Other than that he is doing OK.
Sept. 10th, 2002
I visited Jason early this AM to see how he was doing. I met with the respiratory therapist, the general doctor and his nurse. They all had good news. Jason is still running a fever but all his cultures have come back negative. That's good. He is still having a fever from a possible injury to the "thermostat" area of the brain. That can be good as well because the brain can repair it self as the swelling goes down. He was alert at times though they had to give him more pain medicine. He was getting a bunch of x-rays today and an EEG. The wrist will be the focus to see if that is causing the pain. I had asked him a question and it LOOKED as if he was trying to talk back. He was tired and gave up quickly but he was trying. The respiratory therapist said he still had pneumonia but that it wasn't bad. Said he lungs sounded good and that he had a good cough. He opens his mouth for me to suction him (even some of the nurses can't get him to do that!). He looked good today. Another day for the good. Rob
Well as we suspected he has at least one fracture and a severely dislocated middle finger on his right hand. Renee, Sarah's Aunt was lucky enough to accompany Jason to X-ray and he was awake the whole time. Not exactly sure when they will attempt to fix it but sounds like later this week. His temp was 38.8, quick, what is the conversion??? I forgot! Too high though.
Jay was very alert and looking around and seemed to recognize voices. He was in his own clothes and looked like he enjoyed them.
He sat in a chair for about 3 hours or so. Progress!
Hey I hear Lisa and Diane are coming home to Rochester and will be at St Mary's! What Great News!!!
Sept 11, 2002 A day of remembrance.
Well we met with Dr. Mead this AM and she laid out a pretty intensive plan. First step was to get his hand and wrist taken care of and then to get a handle on his temps. They are going to re-look at everything to make sure there are no more surprises. Once the temps are handles or at least controlled and the pain issues are addressed, he can then be transferred to Monroe Community Hospital. They have a young adult section that will actively get him in shape for Brain Trauma Rehab which could be St Mary's.
She could not tell us about the cat scan yet but we'll keep you posted when we find out. He was very alert when we were there but obviously in some discomfort. Acted like he was trying to talk again. He still has a temp of 104 + or -.
He looks good.
Oh yeah, she said he is pretty much out of the coma, they don't like using the scale for him as he doesn't fit the criteria anymore!!!!!
This poem was written by Jason after the September 11th tragedy.
Tuesday, a day to remember
The Doctors did a lumbar puncture this afternoon just to rule out any infection in the spinal fluid. They said he behaved beautifully for them and even gave him a smile. The Doctor showed me the fluid and it was all clear.
They then took him down to put in a PICC line (a permanent IV line) which can stay in for a long time. They weren't too happy that they had to put it in his arm that has the broken wrist, but it went really well and he was out and back in his room in a half an hour.
He is still running temps, so the Doctor has decided to keep him on a regular dose of Tylenol every 4 hours and they also gave him a patch for his arm which has continual pain medication.
To completely get rid of his pneumonia, he is getting a medication through his trach tube every four hours. He is coughing up anything in his lungs on his own pretty good and the nurse only has to suction him about every 4 hours or longer now.
Even though he was moved all around and given the pain medication, he stayed pretty much awake all afternoon and evening. He had to lay straight on the bed all afternoon until 8:30 because of the lumbar puncture and he didn't seem to like that too much. We put a poster of Sponge Bob on the ceiling and he was looking at it for awhile.
They also x-rayed his left shoulder before I left where he had the seat belt injury just to be sure that nothing is going on there.
He is making more and more improvements every day!!
September 12, 2002
Visited with Jason for sometime today. He was resting much of the time. His temperature seemed good but his respiratory looked labored. They are giving him some pain medication. Still don't know about the wrist nor the femur yet but when we learn more we will post it.
The results came back from the cat scan and has shown damage to the right side of his brain. Pretty much what we had thought.
He still has pneumonia but he is on special medicine for that and should respond.
We will post an update later tonight.
Pretty much the same, with the pain meds every 4 hrs, its hard for him to stay awake for any length of time. He was back on his feeding tube, which is usually turned off at high temps. His temp was at 38.9. Tried too get with the DR but he was tied up. Hopefully tomorrow.
Jason was getting a special antibiotic when we left at 8 PM, which is misted into his lungs. This is for his pneumonia and helps in bringing up the stuff he needs to get out of his lungs.
Robbie was at the hospital with his grandfather and when they had to go and said goodbye Jason put a frown on his face.
September 13, 2002
Jason had Occupational Therapy today, did OK except his left wrist and arm. He is on the usual meds and is running a fever still. They are leaning towards the fever being caused but the injury to the brain. But it may still be too early to tell. They cannot do the surgery on his wrist because of his heart rate and fever. This is typical and definitely a "Catch 22".
September 14, 2002
Jason was much more alert today, he had a cat scan in the AM and was awake until about 1:30 PM. He seemed to recognize the people there, Sarah, Dorothy and her son, Joanne and Robbie. He kept biting his lip for some reason, made some horrible faces when he did. That's when we realized that he was biting his lip.
Vitals were good, temp seemed down and coughed up quite a bit. Did not talk to the Dr yet but maybe later.
Didn't hook up with the DR's but Jason was very alert. Temps were down a little (102) and was still uncomfortable. But he was looking around and maybe even watching a little College football on TV. He bite his lip again, not sure what that's all about.
We had to put our dog Sammy, female German Shepard down but we didn't tell Jason.
Sept. 15th, 2002 AM
BORING. Jason is pretty much out of it and that is because he is on more pain medication. His fever is gone so we will have to keep an eye on that. Jason has a tendency to curl his right hand, the one with the fractures and dislocated bone, and that can cause a lot of pain. They will put a splint on it Monday and if his fever stays away, maybe, just maybe they can do the surgery that the hand needs.
Doctor Sheanan said that the Cat Scan they did yesterday was on his chest to see how the pneumonia was coming along. It has intensified. So they need to concentrate their efforts on that.
Jason was logy and seemed put out, did not want to stay awake for any length of time.
Still no temp to speak of and he was sitting up in a chair. He gets his splint on Monday.
Sept. 16, 2002
Well Jason had his splints put on today. Took over 2 hours to complete the process but it is done. They really knocked him out so I'm not really sure how he feels. Talked to the nurse a little about the cycle of pain and meds that he has been caught up in and she pointed out that even without the meds and pain they still could not do the surgery. His pneumonia has to be cleared up first. Their thoughts are that the splints would help the pain while his pneumonia clears up.
No temps today. Looking up.
Jason was trying to sit up when his Uncle Steve and Sarah and Cindy were there. He tried several times. He was doing much better and when Sarah told him she didn't want to go back to school, Jason lifted his left arm as if to smack her (though everyone knows he would never do that). We take that as a strong indication that Jason wants her to stay in school.
Sarah, ya gotta do what you have to do and Jason says to stay in school!
FEVER Free!!! So far so good. Jason looks great. He was pretty much out of it but was getting better as the night went on. I read him all of your comments, not sure exactly what he heard but I do think he heard some of it by his expressions. Keep them coming, they help!
Splints are back on and seem to help. We need to keep an eye on the schedule for having them on and off and see that the schedule is being followed. When they are off there should not be any red marks or friction rubs.
The Respiratory Therapist was in to see him and said his lungs sound great! Didn't need to suction him at all. The nurses said "if this keeps up it won't be long for him to go to the next level. Not sure exactly what that is but if it means getting his wrist repaired and therapy then GREAT! He tried several times to sit up, at least that's what it looked like. The nurse said he should be sitting up on his own soon.
September 17, 2002
NO FEVER! STILL. Lungs sound good. Splints were re-worked today, me thinks he got another shot for pain. Still kinda logy but he is doing fine.
Talked to the Dr about the wrist, he said that the specialist does not think it would be wise at this time to do any surgery. Reason being, to do it right Jason would need intensive therapy to get full use of his hand. He needs to participate and communicate to do this. He at the moment cannot do this. It would be much better to wait until he can. I can't disagree with this logic.
The pain issues could be caused by the wrist, other injuries or just the brain injury itself. If the fevers stay away and yet the heart rate continues to be high then they may try meds just to control the heart rate. It depends on the pneumonia and the fever.
I asked why the trach, I knew that for transportation and for the pneumonia it was important. But now that seems to be behind us, can we move towards getting the trach out? The Dr said that they would look into that.
Doctors were hopeful that Jason could start rehab soon. More to come.
Jason was more alert in the evening. He was lifting his feet and arm and even made a smile when Joanne and Robbie said goodbye. Appears to be trying to move around due to some discomfort I think.
Tomorrow brings another day.
Just like to say a special hello to Makkiya Hassan and her family, especially MOM. Thanks for the thoughts and hope your brother, Nabiel, gets better soon as well!! Rob and Joanne and Robert.
September 18th, 2002
Well an interesting day. Jason has a slight fever but the nurse had nothing else to report as everything seems about normal.
He is having some feed problems but its not unusual and they are watching it closely. Nutritionist said that he is getting enough to support his calorie uptake.
He was in and out of it as though he needed to get caught up on his sleep. Yeah right. But he is still getting pain medication, mostly in an effort to reduce pain, maintain steady vitals. He gets it through a patch instead of injections to help avoid the spikes. (Spikes would put him out totally for periods of time verses the sleeping he is doing now.)
We had a long talk with the Drs. They are pleased with his progress. They have three fronts that they are attacking. Pneumonia, Pain (vitals), and feeds.
The only thing they said we should not do is to move his right wrist and hand.
They did say he is becoming more and more aware and that it was very important for everyone visiting him to stay positive, reassuring him, reminding him of what is what and who is who. He will be very confused and scared and will need to be reminded of almost everything, things we all take for granted.
September 19th, 2002
Things are looking up. Jason has not had any fevers today! He did though have a bunch of Nurses and Doctors in there today. Planning, analyzing and taking care of him. Aggressive style of health care. He was sleeping when we were in to see him (due to all the activity we think) so we didn't bother him too much. All his vitals are looking up.
Still working on splints, adjustments and what not. He was going back into the chair after his splint adjustments. That's good for him, helps him with bending his knees and his lungs.
More to come.
Jason yawned several times today. He made some strange sounds with his mouth, we could not tell if he was trying to talk or gagging. He is becoming more aware so maybe he senses the trach in his throat.
His heart rate shot up again(150+), either pain or awareness, not really sure. They gave him pain meds for that. He seemed to be looking directly at people in the room and could follow with his eyes from one side of the room to the other. His splints were not ready yet so his right wrist will be tense for another day.
September 20th, 2002
Jason continues to improve even though the improvements may be small. He has a slight fever and his heart rate is up but not as high as yesterday. Right now he is not a very happy camper as there are several therapists in his room making new splints for both his wrists and his feet. Not happy about all this activity.
Pretty quiet night. Temps were down and Jay seemed more relaxed.
Only has the splint for the left arm done, the rest won't be ready for a while.
September 21, 2002
Jason continues to show improvement. He did not have a fever today but his heart rate was elevated (132) and that triggers pain meds. He was not very awake but they had been working on him, splints and cleanup so I think he was tired.
I had a chance to talk to the respiratory therapist this AM and she said his pneumonia was getting much better.
We'll let you know how the day goes.
Still having problems with his heart rate and biting his lip. We will have to talk to the Dr's about it all to see which way to head. Temp has been good.
September 22, 2002
Jason looked better today, the girls cleaned him up, shaved him, washed his hair. Not sure if he liked all that or not. He was sitting up in a chair with his knees bent, first time in a long time.
He is still getting meds for pain so he was in and out of it.
September 23, 2002
Well Jason is sleepy but that's ok. He will be on the antibiotic for 4 more days and if his fevers stay away he may go to Monroe Community Hospital. That's rumor though haven't heard that from the Dr yet. He has not had any pain meds since yesterday at about 12:00PM so he should become more alert.
The OT said he was doing pretty good. Has a specialists coming in to look at the right wrist for a special splint. One that puts pressure, like a spring would, on his wrist but not enough to hurt him.
Low grade temp but as the nurse says, "we all could have those".
The nurse said that Jason would be taken off of the IV fluids as they think he does not need them by IV. They are going to give him more through his feeding tube so that his body can absorbed more naturally.
He was sitting up in a chair this evening and looked good doing it!
September 24, 2002
Slight fever otherwise no change. He was sitting up in a chair and according to the nurse smiled twice while she was gibber jabbing. We put his hand splint on and gave him a shave, he looked pretty good!
Was still in a chair! Had some pain meds as his heart rate was up. Still showing signs of improvement.
September 25, 2002
Jason had his first real haircut since July today. When we washed his hair he lifted his head straight up, and held it there until we were done. His eyes were wide open and he seemed to be enjoying himself. The hairdresser really made him look very spiffy today. Now he really looks like Jason.
His lungs were a bit more congested today than they have been and his temperature was a little on the high side, so his nurse sent him for chest x-rays to check on his pneumonia. We should know later tonight the results of those tests.
Jason still had a fever all night, but his heart rate was pretty low. He was pretty exhausted from the therapy and the chest x-ray so he didn't wake up too much. No results on the x-ray yet. The respiratory therapists said his lungs sounded really good. Don't know if the pneumonia is coming back again. The Nurse said they can treat him at the other hospital for that.
September 26, 2002
Jason had a arterial line problem, an x-ray showed that it had moved. They will fix it tomorrow. His temps are still fluctuating and the chest x-ray showed some pneumonia. The antibiotics are supposed to end tomorrow.
The Drs will discuss his wrist tomorrow, you know our thoughts, FIX IT!!
Could move to MCH next week. Yippee!! Though the staff at Highland has been superb!
Jay was still in a chair, he looked good. He was tired from the days activities but it was still good to see him.
Cultures haven't shown any growth yet, keep your fingers crossed!
September 27, 2002
Jason looked well rested but was still sleepy.
The Drs said that they were going to hold off on the surgery. Said that his fevers and pneumonia were still a problem. They are going to continue with his antibiotics until early next week.
The Drs did say that he could be moved to MCH early next week with signs of improvement.
Lisa, Diane, Nabiel we hope you are all doing well and getting better with each day!!
Jay was in a chair for a long time today, able to hold his head up without any help or pillows. His temps were just about normal, heart rate about 100, respiration was jumping somewhat. He is still getting Tylenol every 4 hours and an occasional pain med. He seemed to be having a headache or migraine, not really sure but was making that kind of face.
He has been getting some new treatment for his pneumonia. They blow up his lungs manually and then suction him. His lower left lope is still congested and may be breeding new bacteria. Hopefully this will get it out.
He is on some liquid food through his feeding tube that is twice as concentrated as the last stuff. This should help him gain some weight and allows them to feed him at a lower rate and still maintain his calorie intake.
He's looking pretty good, just sleepy. Can't wait for him to be awake more...
September 29, 2002
No fevers! Heart rate at an unbelievable 82! Respiration has been good. Still has a lot coming up but they think he is getting better. He is doing so good that hopes are high that he will be moved to MCH soon.
Nancy and Steve shaved and cleaned him up, his mom washed his hair. He looks good!
Stay tuned for the next move.
September 30, 2002
Jason is having another sleepy day. Not sure if it is the pain meds or that he may be mixing up his days and nights. The nurse said he was up at 3:00 AM and was having trouble getting back to sleep.
The did another chest x-ray and an echocardiogram. Checking on the pneumonia and checking for bacteria around the valves of the heart. His heart rate has been fluctuating and they want to make sure nothing is going on there. His temps were down today. Hopefully we'll hear about the move to MCH soon.