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Date: 09 Sep 2004
Time: 07:28:00 -0700
Remote Name: 22.214.171.124
Well, it seems that Liam is adjusting to his new trach tube nicely. It really is nice for him (and us) to have his face open and visible and to not have a tube in place that keeps him from moving his head. They've been taking most of his sedations meds down slowly. The weaning process is necessary, since so many of these meds are really addictive drugs and stopping him "cold turkey" would make his body pretty unhappy.
As he's been awake more and more, we've been able to see him with his eyes open and he's been more alert and happy. He's given us a few smiles and we've seen him begin to play with some of his toys again. We even let him watch some of his favorite shows on TV.
He still has his moments of agitation and he gets fevers off and on still, but it doesn't seem quite as bad.
This past Friday he had a follow-up CT scan on his head to see if any of the neuro problems had progressed. Over the weekend one of the cardiologists gave us a preliminary reading of the scan, and he indicated that it is evident that the disease that is affecting his brain is continuing to worsen. However, he did want to have the entire team (cardiology, transplant, neurology) review the scan and do some direct tests with Liam before they give us their recommendations.
The neurologist that was originally following Liam has moved on to another hospital, so they wanted some time for his replacements to review Liam's entire case. We are, of course, interested in having the docs be as thorough as possible in reviewing Liam, so we're all for taking our time.
So, at this point, we've been waiting since last week to hear what they have to say. It looks like they'll be meeting with us tomorrow afternoon to discuss Liam.
Please continue to pray for our boy.
Liam, Mom and Dad