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January Updates



January 1, 2003!


We are all glad that 2002 is over.  We hope and pray for a better year in 2003.  God willing, Jason will be talking and walking again this new year.

Jason was doing OK today.  Had his new pain patch (25mg) and hopefully he can tolerate it at that level for a while. (Of course he sweated it off later in the day)  Had his trach plugged for an hour in the AM and about 2 hours in the PM.  Seems to handling it well.  

A few more steps....

We wish all of you a happier and prosperous NEW YEAR!

January 2, 2003


Well, Cindy was right.  The "girls" were full of it tonight, giving Jason fits.  But somehow I think that Jason got the last laugh.  Something along the lines of "next time, make sure the plug is in tightly!"  Sarah, care to explain?
Doing well, when his trach is plugged he is making all sorts of sounds.  It is like his own voice scares him a bit.  No doubt, he hasn't heard it in a long time.  But it does sound good to hear it again.
Another day...

January 3, 2003


Jason was doing pretty good tonight.  We asked that he be given a wheelchair that fits him better.  He keeps leaning out of the one he has right now.  He was pretty whooped after OT and PT were done with him.  


Making all sorts of sounds when his trach is plugged.  His cough sounds harsh but I guess that's to be expected.


BTW, the quarantine on his floor has been lifted so anyone can now visit.



Now remember everyone....."SSSSAAAAAAAARRRRRRAAAAAAAHHHHHHH"  Or yes & no. 

January 4, 2003


Jason looked pretty good today.  Got there when he was suppose to be taking a nap.  He was awake, barely.  We took our puppy in to see him and we think he liked it.

Decided to let him sleep as he could use it.

The girls showed up in force.  Michele was a handful. Must be something to do with her turning 18 or something.  She was relentless.

Jay on the other hand was doing fine.

January 5, 2003


Jay looks good, appeared to be watching some football.  Kept closing his eyes at times but that might be more tuning us out because we do pick on him quite a bit. 


Lost his pain patch again, usually due to his sweating.  And he does sweat a lot.

Lots of different sounds coming out of his mouth when his trach is plugged.  Hopefully soon he'll put some together and talk to us.


January 6&7, 2003


Jay has had some interesting days, lower meds, more sounds, encouraging.


His left arm appears to be looser, can lift it without much trouble.  (We can that is)

His right arm he still holds tight to himself.  He gets the rod out next week and hopefully then we can work the arm more.

The Nurses want to try muscle relaxants on him, probably the right call.  He is having a lot of trouble with the pain patch, falling off or being sweated off.  His dosage has to be all over the place.  So they have stopped the pain patch.

Temps are still pretty good.

Jackie came to visit Jason along with his cousin John and Amy.  Jackie was showing Jason her new hair style, blonde streaks, looked pretty good even though Sarah did it.

January 8, 2003


Jay looked good today.

Talked to his Physical Therapist today.  Asked about the chair as Jason has trouble staying in it.  It turns out that his "tone" causes him to shift in the chair.  Which is why we find him leaning out of it once in a while.  They will see if there is something they can do about it.

No more pain patch, will take a few days for him to get it out of his system.


It may be possible that Jason is coming down with a cold.  Hopefully not.

January 9, 2003


Jason did well today, he even went to the movies with his Mom.  They saw Startrek.  Jason had his eyes opened for most of the movie.


He had all the girls up visiting him again.  Sarah even had his left arm straightened out.  Couldn't believe it.  He was pretty tuckered out by 7:30 or so.  But was a long day for him.

January 10, 2003


Jason was doing pretty good today, got his "new" wheelchair.   Fit him better than the old one.

He looked good, more alert than before.  Even looked as if he was trying harder to understand.  Even the nurses said he looked more alert.

Didn't see Wesley tonight, not sure where he was.  Though we did see Bryan several times, not sure if he was the gatekeeper or the shadow tonight.

Jason went down to the salt water fish tank tonight, he liked the fish, even if it was a short visit.

January 11, 2003


Jason was tired today, not sure if he had a rough night or what but he is out of it.  Temp up a little.  Think he may have a slight cold.

January 12 & 13, 2002


Sorry about the updating and comment page, not sure what happened but think it was on the server side.

Jason has been feeling a little blue, discomfort from his right arm we think.  As of today, 1/13, the Ortho Doctor was called about the pin in his right wrist appearing to be causing a slight sore at the end of the pin.  Not sure if it is trying to come out or is an abrasion problem.  The Doctor is going to look at it tomorrow.  This could explain some recent temps.


We will keep you posted when we hear or know more.  For now we have asked the nurses to give him something for pain as he is obviously discomforted by it.

January 14, 2003


Well that was something.  Went to his Doctor's appointment for the pin in his wrist today.  The actual procedure to remove the pin took all of about a minute.  Small incision push the pin out slightly, grab it with a set of pliers, twist a few times and pull it out.  Done.  Put a bandage on his arm and he was ready to go.   Unbelieveable.


We think Jason was relieved.  Seemed to have less stress, breathing was returning to normal.  He was running a temp of 103 today, we will see what happens with that.

January 15, 2003


Man oh man was he tired today, either that or he was shutting us out.  The nurses said that he should rest today, but after that, we've got to get him moving.  His right wrist is swollen so I'm sure he won't want to leave the hospital with us anymore as he always comes back with something else that causes him discomfort.  Hopefully this is temporary.   We need to get him going on therapy to loosen him up.  Next week we're hoping that his physical therapist will boost his therapy up from 3 days to 5 and become more aggressive.  This of course is if the doctor OK's it.  His hand doctor said that he should be good to go with increased therapy.

His temp is back down from 104 +, normal the evening.

Sarah, Michele is picking up right where you left off.  (Though we are not sure if she did his mouth guard or not.) Poking and squeezing Jason.  (Funny cause Wesley is just amazed and watches her drive Jason nuts.)

January 16, 2003


Not a good day.  Jason has developed a Staff Infection.  Appears to be coming from his right wrist, the one that had the pin removed on Tuesday.  He was running a temp today and his wrist had ballooned up. 

Jay has been transported back to Highland Hospital, room 620.  He has to be given antibiotics through an IV.  He cannot do this at MCH, not sure why.  They need to take more samples from the swelling to run more cultures to narrow down the Staff infection bug.  Just to make sure that he is getting the right type on antibiotic.  

Just when we thought that Jason could get to be as pain free as possible this had to crop up.  This kid is tough though and we are confident that he will pull through this as well.

He was pretty alert at times and was aware that something was not right. 

If you do decide to visit, please remember this is a very serious STAFF infection and precautions should be taken.



January 17, 2003


Jason is going to need surgery today to help remove the infection in his right hand/wrist.  Not what we would like to see but if it helps him get better then we are all for it.

Surgery should take place late this afternoon, between 3 and 4 PM.


He has been given vicodin and has a 25 MG fentenol patch.  Yes he is pretty much out of it.


Jason made it through surgery just fine.  Had a small pocket of trouble but they got it all out.  Doctor said everything looked good.  Hope to get him back to MCH sometime next week.  We'll be waiting.

January 18, 2003


Jason looked much better today.  He was pretty alert.  His hand even looked better.  He was having a hell of a time though.  They put him into his chair and his water tube came off and spilled all over him.  So they had to change his top and change his sheet.  He did not like that.  Then his catheter came off.  Got wet again.  Time to get out of the chair and back in bed.  Just could not win today.

January 19, 2003



Jason is looking good today.  His temp is 101.6 or so.  He needed some cleaning up at first.  The nurse came by and said how appreciative they were hat we would come in and help take care of him.  This floor is normally for elderly people without trachs and what not.  They are not use to people in Jason's condition.

Jason is getting ready to watch football, but suspect he will sleep through most of it.

The cultures confirmed staff and Jason has been taking the right antibiotic for that bacteria.


Sarah, Michele and Katie visited later in the day, they gave Jason a pretty good work out.  Jason even had his hand on Sarah's butt, though not sure if he knew it or not.  But it was kind of cute.


We think after six months that Jason should be over most of his pain issues.  Of course he will still have pain from rehab but all his other pain related issues should be resolved.  This means that he should be able to start intensive rehab.  This is what we have been waiting for.

January 20, 2002


Jason was doing OK today, the girls were up there early as they had to go back to school.  Katie was shaving him, oopps! sorry! 

Temp was better.  He did get sick once, not sure what that is all about.  He was going in for his central line today at about 4:30 PM or so.  Hopefully he can go back to MCH so that he can continue with his rehab.

January 21, 2003


Jason was doing OK today.  He is going off one of the antibiotics.  He has had all the IV lines removed except the central line.  AND if everything goes OK he will get to go back to MCH on Friday.  We are keeping our fingers crossed.  We haven't heard this from his primary Doctor but she has already said that she wanted him to get back to MCH as soon as possible.

January 22, 2003

Jason is looking better.  Sweating up a storm.  Of course the nurses on the 6th floor are not use to him, sweating and all.  He has become agitated at night, either from the Doctors being around or several nurses at the same time, and his heart rate goes up to the 140 range.  We have seen higher but it does show that he is more aware and that he may sense nervousness on their part.  They did give him something for anxiety, probably not a bad idea.

His white blood count is going down so we are not sure why he is still on several antibiotics.  We'll check with the Doctors later tomorrow.

January 23, 2003


Jason is getting good at (Man am I cold, just spent a half an hour outside snow blowing the driveway, 6 degrees outside, ya gotta be nuts!) shutting out the nurses as well as us.  He is upset, probably due to his right wrist, and he is letting people know it.


Good news is that he may be able to go to MCH tomorrow, barring any complications.  Temp is good, white count still dropping.

January 24, 2003


Jason looked very alert today.  If he remembered how to talk you would think he was going to at any moment.

Temp was normal, but won't be going back to MCH just yet.  He has cultured another bacteria but the antibiotics that he is on should take care of it as well.  Just need to monitor him for a few more days.

January 25, 2003


Jason looked good today.  The Doctors came in and said that he no longer has a Staph infection.  Great!  He can go back to MCH on Monday, they just did not think it would be a good idea to go to MCH on a Friday.  There could have been alot of questions over the weekend.  He was real tight but with all the girls up there I'm sure they will loosen him up.

January 26, 2003


Well, today is the last day for one of the antibiotics.  Still has to on the other one for about 30 more days.  He was extremely tired today, yesterday must have worn him out.  (The Girls)


Keep your fingers crossed, he should be going to MCH tomorrow!!  He needs to get back there.

January 27, 2003


Jason look pretty good today although he was shutting out people pretty good too.

We waited better part of the day just to learn that Jason will go to MCH tomorrow.  MCH would be more comfortable if his catheter problem was showing definite signs of improvement.  No temps and the Infectious Disease Drs said everything looks good and he will remain on the antibiotics for another 4 weeks or so.  

Jason was doing good tonight, he was in the chair for a while.  Some thought he may have even burped.  Not sure but he did have some pop.  So maybe. 

One of the nurses from the 5th floor stopped in when she saw Jason.  She was confused and thought he had gone to MCH some time ago.  She did not know that he had a problem with Staph and surgery on his wrist.  She was real glad to see him and thought he looked great and that he had put on weight.  Beth and Wendy also stopped in to check on him.  They had checked the web site and seen that Jason was back at Highland and decided to check on him.  Aren't they great!

January 28, 2003


Well we did it.  Jason is back to MCH and in his own room none the less.  Great news!  Now we can get him started back on his rehab schedule.  The wrist may be a problem but without talking to the Dr about it we are just not sure.  If we bend the wrist it seems to bind.  Like a bone on bone feeling.  But he may need to strengthen his muscles to pull it back together.  Just not sure.


It's good to be back.  Jason seems much more relaxed.  Kinda sleepy but to be expected.  He just seems more peaceful.

January 29, 2003


Jason was certainly wide awake today and tonight.  He was chewing a lot and was only suctioned twice, not the usual three times.  His legs were a little more relaxed too.  His friends at MCH are very happy to have him back, they all missed him. 

Now it's time to get him off the pain medication and on to aggressive physical therapy!

January 30, 2003


Jason is doing fine.  He was breathing a little hard tonight but that could be because he is more alert.


He should be on the pain patch a while longer, getting back into physical therapy is going to take a little getting use to.


He does look good even though his weight is down to about 155.

January 31, 2003


Jason was doing ok today, pretty alert.  He was more tired as the day went on but that's to be expected.  Or it could be that he just misses Michele.  Who knows.

Sarah had his left arm pretty relaxed tonight.


Pretty ho hum day other than that.