Tonight is a big night for us. John will bring Harrison and me to Children's Hospital for our big sleepover tonight. They are doing a capped sleep study on Harrison, which means that they need to monitor his breathing while the trach is capped, overnight. Easy, right? It should be, he has had the cap on his trach all day and all night for weeks now. Of course not. It is a whole procedure...EEG leads all over the place, and a nasal canula under his nose to monitor his breathing output, to make sure he does not have sleep apnea (oh we hope not!) Poor guy...I just hope he can get some sleep. This is Step 1 toward losing the trach...good vibes, everyone, PLEASE!!!
In typical fashion, what we thought would be a simple procedure, easy in and out of Boston (ha! that's a good one!) has at the last minute become just a little more complicated. We had planned for a typical sleep study, in the Sleep Lab, going in at 7:30 pm, with a nice bed for mom to sleep in next to Harry, and leaving at 6 or 6:30 am tomorrow morning. Friday, the Sleep Lab docs reviewed his chart and decided they were "more comfortable" with Harrison being admitted as an inpatient, on the ICP (Intermediate Care Program, where he practically grew up)...in other words, they are afraid of him. Yesterday, the day before the study, is when I got the phone call to learn about these changes. OK, I have just written and deleted two opinions about this...anyway...This calls for a 4:30 pm admission- sorry, that's not going to happen this late in the game. I talked them into letting us come in at 6:30- and a noon discharge tomorrow- ugh. Oh, and mom gets to sleep on a little mattress on the window sill. NICE! Really, THAT should be my biggest worry!
So...(oh gosh now I sound like all the docs and nurses there, they start every sentence with "So..." That is SO annoying)...tonight is a big night. We want proof that Harrison will be able to breathe safely and efficiently without using the trach, just his mouth and nose like the rest of us. If this is a good night, we will move on to Step 2, to be discussed when the time is right of course. If you know me at all, you know that even talking about this before it happens is huge...but I am determined to stop being ruled by jinxes!
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