Monday, June 20, 2011

Day 1 at Strong in Pics


The rest of the day proved rather uneventful, which was welcome. I did not receive word from the first night's CAT scans, but Henry went through two applications of tiny little colored wires attached to his head. They want to see what his brain is doing when (and if, but hopefully not) he has another apneatic episode. I'm not feeling it will happen again since he's gone 24 hrs without incident. Some developments: 1) He got put back on regular feeds! Yay! He was hungry! and 2) He was taken off the nasal canula (O2 into his nose). Double yay. I also managed to get them to detach him from the nutritional IV that he was using last night. One less !@#$ TUBE/WIRE! Tomorrow i'm going to see if he can come off the BP cuff unless and until a reading is needed.

Today, a friend contacted me with a 'lead' in what might have caused Henry's apneatic episodes. Her name is Kristine and her son Jeremy had cleft lip/palate repair (years ago, but the info is still current), among many other complicated surgeries; I have always been in awe of their journey and resounding strength. 3 weeks after his palate repair, he too had breathing difficulties, although much more severe, and requiring much greater measures in correction (placement of a tracheostomy). The repair of his palate turned out to be the culprit. I've been doing a little research, through her documenting Jeremy's story, as well as further info through the internet, and I've requested a consult with Henry's attending physician. I was hoping for it tonight, but they were busy with a transport and a transplant! Dr. Finnerty also proposed that the palate repair might have something to do with this change. Afterall, the timing is right (although not immediate (6 wks)), as well as common sense: a great big airway has been closed off. Henry's physical anatomy might not be easily adapting.

For the record, the above are all just my THEORIES and viewpoints and thoughts. I feel strongly in sharing them with the attending tomorrow and I hope to do so in a convincing, compassionate, logical and thoughtful way. It's a route that i have not heard, so far, is being investigated, and from what little I've read today, seems QUITE correlated. We shall see. Updates to come...


One EEG study was apparently not enough. Now, for the 24 hr "heavy duty" one...

"Dude... are you kidding me?"

Henry, sportin' the Tube Head look.

G'night, Sweet Henry Huggins. Sleep well, lovey.

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