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Date: 27 Aug 2004
Time: 11:02:09 -0700
Remote Name: 22.214.171.124
It's been quite a while since our last update...and a lot has happened. We had been waiting to update the blog with some better news, but decided that it's time to let you know what's going on.
Up until last Friday, things were going pretty much as normal for Liam. He was on the heart transplant list, waiting. He'd get fevers here and there that they'd treat with antibiotics in some cases. Last week the docs decided that Liam should get a full-body CT scan to determine if there are any pockets of infection that weren't previously detected in their prior checks. Part of the scan included checking Liam's head.
The scan came back showing that there were no problems with infection in his body, but the neurologists were concerned with what they saw in the head portion of his scan.
Apparently, Liam's brain is showing signs of damage, likely the result of poor perfusion to his head. On Friday evening the neurologist and one of Liam's transplant doctors sat with us and explained the situation.
Liam has brain damage, somewhat beyond what you would associate with a learning disability. Although the neurologist couldn't tell exactly how severe the damage is at this point, the impact on his abilities may be in the range of anywhere from not being able to walk, talk and feed himself, up to a more positive outcome, but still with definite mental disabilities.
Then Liam's transplant doctor explained that with Liam's current physical condition being as poor as it is, she didn't think it was likely that Liam would survive a transplant operation. Therefore, they are taking him off the active recipient list for transplant.
This news was, as you can imagine, shocking and very upsetting to us. We felt that Liam has come so far and worked so hard, that this wasn't very fair. Over the next few days, the doctors suggested a possible course to take for Liam to try to get him stronger and make him more capable of receiving a transplanted heart, although they didn't sound very encouraging.
After much thinking and praying and discussion, we decided to try the doctors' recommended course - Liam would be getting a tracheostomy to try to make him more comfortable. With the trach in place, he will hopefully be less agitated and they'll be able to lower his sedation meds, giving him a chance to wake up more. That way, we hope he'll be more comfortable and happy - being able to be awake, without a tube coming out of this nose.
They are giving him lipids via IV line and he's getting higher calorie formula to try to bulk him up. They will plan on reassessing his weight gain over two weeks and make a determination whether he's gaining weight appropriately. And, as for the tracheostomy operation...he's in the OR right now. The procedure itself should take only 20 minutes and the doctors feel that the risk of an operation is worth it to give him this better quality of life.
So, if you wouldn't mind saying a few prayers for Liam...for this operation...and for the hope that he gets healthy enough to get a new heart...we would appreciate it.
The Kelley Family