Monday, November 14, 2011

Monday- PICU

As I sit here now Wyatt is awake and just finished casting "spells" with his Harry Potter wand on a couple special friends (and Doc). God is so good!

We're making progress and the mood is definitely lighter all around. Last night he really woke up for the first time, talking and even smiling at Bryan and my awful jokes. The infections appear to be under control and in turn allowing our boy's body to relax a bit. It's so good to see his smile, even if only for very short spurts before needing more pain meds and/or to rest for extended periods. I've now begun to breath again and am setting my focus on getting back to our usual "home" in the hospital with his daily "team" that knows him best and ultimately our actual home.

The process has been started to get this boy of ours on Omegaven and right now we're awaiting approval from the FDA. We're not certain how much it'll help as his liver disease stems not only from the use of TPN but more so from the effects of Mitochondrial disease. But if it should only decrease inflammation and increase his comfort, then that alone will be a success.

At this time we've stopped the methadone as that was thought to be contributing to the arrhythmia's. Though, we haven't written it off completely, there's thoughts of using it as an additional medication to assist in pain control at a lower dose. He's currently getting continuous doses of Fentanyl and Dilaudid, along with additional frequent doses of Dilaudid and Valium as needed. We've increased dosage amounts of his transdermal patches since being here as well.

His BiPap settings have been increased due to CO2 retention. And since being in the PICU one of the respiratory therapists thoughtfully completed a mission for us. We finally found a BiPap mask that allows Wyatt to wear his glasses during the day. This is exciting, he relies on the BiPap machine for day and night now, so being able to wear his glasses is very important!

All are steps being made in the right direction. I'm so happy to be able to share positive news with you all. Thank you for the thoughts, prayers and notes of support. It really does mean so much.
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1 comment:

  1. Oh, gosh, i am so happy to read this!!! I pray that his liver LOVES the omegavan(sp) and that he is able to get home soon. ANd, as a fellow blind without glasses person, I am SO GLAD he can see AND breath!!! Its the little things you know ;)(j/k).

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