Today we had to head over to Seattle to have a few appointments. First one was to do the post-op for his G-Tube and do some training. Clear him to start his feeds. Then we were doing the VPI Clinic which several tests to figure out if 1: Nathan's palate is moving, 2: if Nathan's palate is long enough, 3: If he needs surgery to lengthen it or anything else. And then try to meet up with with the supplies Nurse/Nutritionist and get all his supplies to start feeds tonight.
All the stuff that goes with this one kid for one not fun day to Seattle (for dr appts) left the house at 6 am and won't be home until dinner (or later)
Tacoma Narrows foggy ... I thought it was petty....
This is the request we kept getting all the way to Seattle .... seriously???? Someone had Skylanders on the brain....
This is how he feels about G-tube training ...
The start of VPI Clinic ...
Nathan and Poindexter....his wolf. Nana got suckered..
Done with appointments. Got supplies. Headed home
So ... We had his g-tube this morning, was a lot easier than I was anticipating. We got all his equipment before we left the hospital today - Daddy is getting a crash course tonight. He's doing his first feed tonight.
The other appointments were ... odd. Bad news on bad news I guess.
So ... they did a scoping where you can clearly see that Nathan's palate does not completely close. (causes speech issues, on top of other speech issues he has, with liquid and food - spaghetti noodles baby! - sometimes coming out of his nose)
Oh and remember when Kaedyn threw that 2 lt bottle of soda at Nathan and hit him in the face - yeah well his nose did get broken - his septum is all the way to the right side, so they couldn't put the scope up the right side of his nose. Why is it that none of my kids had major issues (other than Noah's medical stuff and Cal's Leukemia scare) ... until Kaedyn comes along? Then all of a sudden I have to call Poison Control twice (both times on Kaedyn), Cal gets a broken arm, Noah gets a broken nose (falling down stairs), Nathan gets a broken nose (courtesy of Kaedyn) ... ::sigh::
Anyway .... so it's clear that he has issues still with his palate. It is moving minimally, however it does NOT close all the way (which means it's not long enough) and he DOES NEED SURGERY to correct this. However, Dr. P does not want to do surgery at this point in time, even though he needs it. He wants to revisit it in a year. Why? Because he's scared it will kill him - not kidding, those are the words that came out of his mouth.
He says Nathan's airway is so small he's concerned it'll cause more damage. He's also concerned that the HGH will make his lingual tonsils larger and decreasing his airway more. He is hoping that the G-tube feedings and the HGH will help his growth and he'll be able to have the surgery in a year, so he wants to re visit the thought of surgery in a year (next April so a little less than a year) ... otherwise we may have to discuss options for his airway. What the heck does that mean? And I didn't ask....
Also his left tube is still blocked but we're not going to worry about it right now unless it gets infected and smelly again .... so yeah. Scary biznitz ...
We went ahead and started his feeds tonight. I managed to get his pole set up by where he had his bed set up (not an easy thing) ... started him out on one box of feed (geez, is he a chicken?) and at only 20ml per hour.
His ..... thought process ..... on this.... "I'm not hungry" ....
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