Talk About Dragging Out the Process

It seems that we have been able to add a new word to Harrison's vocabulary....are you ready for this? The word is "NORMAL," as in "Harrison's sleep study was NORMAL!!!!!!!!!!"

I know, I can't believe it either!!!!!

So can we get rid of the trach?  Nothing is straightforward with this kid...

Our trach doctor has always been somewhat nervous about Harrison's seizures, since the root of this evil does seem to be neurological, all those random, unidentifiable airway obstructions, so Before we schedule anything, the doc wants to confer with the neurologist...ok, he is out of the country...so let's put something on the schedule, we can always change it. (By the way, Harrison's seizures, knock wood, don't seem to effect his respiratory status)

So here's the plan: on Friday September 30 Harrison will go to the operating room bright and early for a full bronchoscopy, where they can look at his entire airway to make sure all is well and good. Then, he will be admitted to the ICU and then, out comes the trach, and then he is monitored for 24 hours. Then, whereas most kids would go home, Harrison will of course go to a regular floor where he can continue to be monitored for another 24 hours (it's fine, really, although we will be kind of bored hanging out there over a weekend, but we'll deal with it, trust me!)  Always making things complicated, this child is.

The hole should close on its own fairly quickly.

This is where we are. Yes, I am going crazy with excitement and anticipation on the inside, and my nerves will be shot as it gets closer, but I am trying not to dwell on it and I have learned to expect less so that I can be pleasantly surprised rather than grossly disappointed (who am I kidding, of course I will be grossly disappointed if it doesn't happen, but I figure, rather than holding this news in, I'll share it and then you all can pick up the pieces if our hopes are dashed, right? RIGHT??). Let's just see how it goes and hope for the best. 

It will be the second day of Rosh Hashanah, and I cannot think of a better way to start off the new year! Harrison, L'Shana Tova Tikatevu...May You Be Inscribed in the Book of Life for a Good Year (and lifetime)!

Quiet Night

Sleep Study, Part II. 

This past Sunday night could not have been any more different than the first try we did in June...WHEW!

Harrison has been feeling good, happy, healthy. Our nurse was one of our regulars (we love you Lauren!), we had two very sweet ladies from the sleep lab work together and calmly to attach the EEG leads to Harrison's head, wrap it all up nice and neat, and then talk to him and play with him afterwards to make him forget all about the hour long tantrum he had while they were working. He fell asleep easily, and believe it or not, Mom even slept on that awful cushion they put in the window seat (albeit with very strange dreams about being in that very spot and NOT able to fall asleep because of the 5 people talking in the doorway, who really were not there...what was I drinking?) He had a good night's sleep, and to boot, they let us out early for good behavior! (Usually we would not get discharged until noon but they let us go by 9:30AM!) His O2 SATs were good (blood oxygen saturation) and there were no incidents. Results I hope this week, but I think it went well...YAY!!!!!

Stay tuned...

Trust Your Instincts!

Sunday was definitely a rough day, and we are sooo glad we cancelled the sleep study, because Harrison was up Sunday night from 1:15 - 4 am! It is rescheduled for 2 weeks from now, Sunday August 14. I still have the two movies I downloaded, and our nurse for Monday (the next day) is back from her honeymoon so as soon as we get home I will have a desperately sought date with my bed.

Sunday was one of those days when everything was in question...in other words, I put a phone call in on Monday to almost every specialist he sees. Also that day, my friend mentioned that there was a nasty virus going around, and at that same time I noticed that Harrison seemed to be more and more himself...usually, when I reach the point of calling every doctor, things do seem to right themselves very soon after ("I swear the engine was making a funny noise on the way here!") and, you know what...that's fine. It probably WAS a virus. See, when he gets a virus, it's like the robot whose wires just start smoking and everything goes haywire. His systems that are already weak are the first to react...and then Mom reacts, and Mom usually has the bigger meltdown, and then he rests and things start getting back into place, and Mom is calling the handyman to fix the holes in the wall from where she banged her head repeatedly. Anyway, on these occasions I am more than happy to be wrong (was it the vitamin we started? the new foods? does he need a higher dose of a medication? is it the heat?) Yes, I am happy to worry for nothing. He, hence I, had a much better day yesterday, Monday, and he had a great day in school today. In fact, though he screams for DSS when I put him in the bath or try to dip his feet in the neighbor's pool, he actually sat in the kiddie pool at school today and was, so I hear, delighted! HURRAY!!!  He's gonna be sorry they told me  :)  heh heh heh

He is enjoying tasting different foods and trying new textures more and more, as well. These days he likes (loves) whip cream, the inside of a peppermint patty, chocolate brownie or ice cream, ketchup, pasta sauce, some dressings, some cheese, blackberry yogurt, Gerber Puffs (broken into tiny pieces, that I stick on my finger and then stick onto his jaw- but he is actually chewing!), and even a little sip of his milk if I squirt it into his mouth from a syringe. Here's the best one though...the most solid thing I have given him and he does really well with, is a little bit of those Laughing Cow cheese wedges stuck to a little piece of bread (the inside, the good part, the soft part that we used to roll up...am I the only one that did that?)  Anyway, he liked it!

As you can see, eating is hard work for him, but he does enjoy it and that is the first step to becoming a pig like his mommy. No one can say this family doesn't know how to enjoy a good meal.