Thursday, September 17, 2009
So, I am not sure where the past 2 months have gone. Looking back, it seems we spent half of the time having fun with family and the other half on dumb doctors...
Blake and I took a trip to UT at the end of July for a family runion and had such an awesome time seeing everyone. My family celebrates with all sorts of fun and silly activities like archery, a fly-off, a pinata, watching movies projected on the garage door, skim boarding in the canal, etc. and I love it all! We also got to go swimming at aunt Jill's so it was great to catch up with the Shupe side as well.
After we got back to VA B had a procedure to switch his G tube to a G/J tube (which just means that they add extra tubing inside that allows the food to bypass his stomach and go straight to the intestine). I have to say it was one of the WORST things we have ever had to do to/for him. First off, they did not use anestesia - who does that?? It was suppose to be a quick 5 minute thing, but after at least a half hour of him screaming they stopped to get another doctor to assist and we were finially able to get them to relent for at least some local numbing. I can't even explain how angry I was. I just kept thinking how they would never do that to an adult, so why to a poor kid who has already been through so much? I don't know if I can blame it all on that incident, but it has really effected his behavior. He is now scared of EVERYTHING - vaccum, hand mixer, a fan. He just freaks out at the drop of a hat and it breaks my heart everytime. To add to his challenges, his digestion has gotten worse instead of better. First they thought it was a new food intolerance, then it was a bug, then the medicine used to treat the bug, and on and on. I frequently wish that I could just explain things to him, but then again I have a hard time understanding it myself and it is hard not to loose hope that SOMEDAY this will all be managable, if not gone!
On a more positive note - we did have another miracle come out of all of this. When we had to change his formula, it was of course to one that was even MORE expensive. Our insurance denyed our claim again (since he does not have a "specific inherited metabolic disease" - how lame is that? He can't swallow - how much more inherited does it get? anyways) and we honestly could not see any way that we would be able to afford it. I know most people might not post the details, but as you will see it is outrageous. A case of the food costs $169. Seriously. AND a case only lasts us 6 days. So, we were looking at almost $850 per month for this stuff. What?? So, on to the miracle. We found out that Nestle is the manufacturer and they have a program where you can qualify for up to 2 free cases per month. They do it 6 months at a time, so two days later UPS delivered 12 cases of formula to our front door ($2028 worth!) THANK YOU NESTLE!! All I could think of was "like Mana from Heaven".