April 2009
18 posts
Update from Dad (04-09-09 11:45 am)
TEAM TOMMY,
We are patiently waiting for the transfer to TIRR which is scheduled for 3:30 this afternoon. Tommy did not sleep much last night, so he is resting peacefully now. The pediatric team came in this morning to check on Tommy, say their goodbyes and see if we had any last minute questions. So, for now we wait.
This will be the last post for this website. A new site is set up and we...
Update from Dad (04-08-09 5:30pm)
TEAM TOMMY,
Well, the much anticipated meeting with the doctors is over and questions have been answered. The neurologist said that all the test results are in and they DO NOT think Tommy has vasculitis. They think the narrowing they found in his vessels is from either scar tissue in his brain or a plaque buildup from lack of circulation. They plan to try to treat the issue with an aspirin...
Update from Mom 4/7 @ 7:30 p.m.
Good Evening TEAM TOMMY,
Well Tommy got plenty of sleep yesterday after his procedure, so guess what he did not want to sleep last night. He finally fell asleep about noon today. Craig got here around 11, so we let him sleep until 4. We then got him into his wheelchair and went for a walk in the park across the street. He really enjoyed being outside, but more so being away from the road was a...
Update from Mom 4/6 @ 11:30 p.m.
Good Evening TEAM TOMMY,
Hope all of you stay warm in the morning…I hear it is going to be verycold. I sure glad I don’t have to go outside…brrrrrrr !!!!
Tommy and I are settled in for the evening. He has rested all day, so there is not a lot to tell. The doctors told me I could get him into his wheelchair if I am gentle with his abdomen, but since I am here alone I...
Update from Mom 4/6 @ noon
Good Afternoon TEAM TOMMY,
We are back in the room after his procedure this morning and all went well. The doctors put a scope down to check out his esophagus and intestinal area (he even took pictures for me…) and everything looks great. They were able to change out the old feeding tube (G tube) with the new one (Mic~key tube) with absolutley no problems. We got back into the room and it...
Update from Mom 4/5 @ 5 p.m.
Good Afternoon TEAM TOMMY,
I returned here yesterday at 3:25 and man I sure was glad to get back to my baby man. After getting settled in..and moving back into the hospital…lol…I got Tommy in his chair and we went for a walk outside for about an hour or so. He so loves being outside, it sure seems to settle him down when he is not feeling so well. We returned to the room and spent a...
Update from Stepmom 4/4/09 @10am
TEAM TOMMY—
Sorry about the lapse in the last 2 days, we have not been sleeping much. Tommy just doesn’t seem to be comfortable in any position. Thursday night, Billy and I were up all night with him, trying to find something or someway to soothe him to sleep. No luck. Friday morning was spent trying to catch up with sleep one at a time and keep up with doctors. Billy left for...
Update from Dad 04-01-09 11:55 pm
TEAM TOMMY, To catch everyone up on what has been going on in the past few days… it has been verified that Tommy had two strokes over the past two weeks and has had a million or so tests since then to try to find the cause. Tomorrow morning Tommy is scheduled for a series of MRA’s on his neck, chest, abdomen and pelvis to see if the vasculitis (narrowing of the blood vessels) they...
Update from Stepmom 4/1 @ 1 am
TEAM TOMMY
I got here around 8:30pm to relieve Jill tonight after getting off work. Tommy had all his splints on and was peacefully just looking around. Jill updated me on all the happenings and information over the last couple of days. Tommy will be having a CT with contrast of the neck in the morning. We also hope to be hearing results from the EEG (done on Friday) and the Echo (done...