Wave Knocks Him Down, and He Gets Up Again...

We finally, FINALLY, heard back from Harrison's doctor about the sleep study. And, we can do it again. Apparently the equipment the sleep technicians use is more sensitive than the regular O2 monitors that we use at home and in the hospital room, and of course they pick up more information. Which makes me question why they don't use the same equipment in the hospital room, and at home for that matter...I will never understand the health care industry and how our health can be so secondary to their paychecks...

Anyway, Harrison's O2 dropped a couple of times (which NEVER happens at home unless he is sick...and like I said, he was on the second day of a cold, and if they had done this study 3 days earlier when it was originally scheduled then this probably would not have been an issue, and if he does need a little oxygen support we give it to him, trach or no trach...) and the doctor is not ready to remove the trach. He was very agreeable to schedule another sleep study, and I am waiting to hear from the sleep lab with a date. 

By the way, our doc was EXTREMELY angry that the sleep lab passed Harrison off to the inpatient floor...he agrees that this could have been done very easily in the sleep lab and if Harrison runs into trouble, all we would have to do is take the cap off of the trach... so hopefully he will get us into the regular sleep lab for this next try.  We have until October to remove the trach, so there is some time to play with.

A Little Choppy

Harrison's sleep study was OK. Not perfect. Really, who wants to have a couple dozen little metal tags air-glued to their head, face, arms, and legs, and then have little tiny pieces of paper with CO2 sensors on them tickling their nostrils, on a good day??? With a new cold, including coughing congestion and runny nose, and little means of communication to really understand what is going on...not a happy boy. But he did finally fall asleep at 9:15 and slept great until 3 am. Then the coughing started, some suctioning needed, and he kept coughing off that cap on his trach. As un-gentle as the tech was applying the EEG leads, he was actually very good at helping Harrison calm down during the hour and a half that he was awake and very congested and restless. And a little Tylenol helped too  :)

He finally fell asleep again around 4:30 until 5:30 and then they just ended the test since there was only a half hour to go and Harry was wide awake anyway. I did ask the sleep tech if there was room for comments on the data form, and he said yes, and agreed that he would indeed note that every time the cap came off the trach it was because Harry blew it off himself, NOT because we had to take it off to help him actually breathe. Hopefully the suctioning incidents won't work against him...my feeling is, if the trach was not in there then all that nasty stuff would not get caught on it and he would just cough it up out of his mouth like the rest of us...

Results in a couple of days...I'll post when I know more.

Meanwhile, special THANK YOU to our dear friend Rabbi Susan who stuck around the hospital until 6:30 pm on a Friday night to see us, wish us luck, and bring us our challah! Since Mom did not fall asleep until 4:30 am, and only for 30 minutes or so, that challah was truly blessed bread, getting me through the night!

Hey Where Did That Wave Go?

OY VEY!

Children's Hospital is so predictable. I got a call at 3:15 pm that there are no beds available for Harrison tonight and we need to reschedule. (By the way, I have complete empathy for those families sitting in the ER right now hoping and praying for a bed on this amazing unit, and I am more than happy to give one up to one of them when our procedure is, after all, elective, important as it is). After I simply would not accept a date after next week they all of a sudden found a spot for him this Friday...so that's where we are.

As for all the changes in time and location of the original study, it seems that the reason they are "not comfortable" with Harrison in the Sleep Lab is that they prefer he have the bedside nursing, which is not available in the Sleep Lab. Ok, that's fine and makes sense...I just wish I didn't always have to pull teeth from 5 or 6 different people to get the whole story.  I swear, the communication from that hospital both to families and among doctors, nurses, and every other staff member there is as dreadful as their Marketing Team is exceptional...(interpret that as you wish)

Big Wave Coming

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!

Wish us luck!