Wednesday, November 13, 2013

Mommy Instinct Wins Again!

Not sure learning my son needs his second g-tube in his life is necessarily something most would chalk up as a "win," but in this case, I count is as such.

Garrett and I flew to Seattle Monday. His appointment with his Mito doc was Tuesday morning. We just flew back home last night.

Tuesday, I finally got confirmation of what my mommy-instinct has told me for at least 9 months. Garrett's brain nor body are getting what they need nutritionally. Dr. Saneto led me through the thought process of how Mito can affect each person differently.....again, today in Seattle. It seems like Garrett's brain is most affected by Mito, now that his colon is better (or just being manually flushed) because of the ACE procedure that is working beautifully to keep his colon emptied. Before the ACE, his colon was certainly a big mess, but the brain was probably equally affected or maybe a close second.  I have felt that his brain may need better nutrition. His muscles, while very small and somewhat low tone, are very much a priority, it seems. He has tons of energy, albeit not governed or controlled very well at all. Then there are all the internal organs that seem to be functioning quite well, and it looks like his brain must get the leftovers. Throughout the past year(s), his weight has climbed and dropped a few times, but he has never had a true growth spurt of weight or ever looked "great." He is just so thin. He would go through times when he would eat better, and then he would slump, and then it would improve. Last spring, we trialed him off a couple of his mental medicines, but his behaviors showed us he needed them and that they had been working wonderfully. False hope I had that he had improved so much we could drop some drugs. Then we saw his appetite go away, but thought it was due to stopping one of the mental meds that also stimulated appetite. We restarted the drug that stimulates appetite with hopes he would eat again, and while he did eat some, he didn't go back up to the appetite he had prior to stopping the med. Out G.I. specialist wonders if this whole time his colon wasn't worsening. Maybe so. Meanwhile, as the ACE procedure came up as an option for Garrett, I asked the pesky g-tube question. Knowing about the g-tube from Garrett's tube that saved his life and made him finally grow when he was about 16 months, I knew what a wonderful tool it could be and wasn't fearful of it. G.I. said to ask surgery. Surgeon said he would like to do g-tube and ACE together to ensure best possible ACE result of intake of fluids and food to keep things moving through his system, but then asked if Garrett seemed to eat better after he finally pooped using lots of meds and laxatives to get the poop out. There seemed to be a good correlation, so we called off the g-tube. I am glad we did, truly. Now we know that the ACE alone doesn't give what it needed to get Garrett to eat. Apparently, appetite and empty colon are not as closely related as we once thought. So I asked the g-tube question of G.I. again last week, but we see in Garrett's growth that he is back to his weight he was a year ago and has started a tiny growth upward. This growth aside, I still wonder if we will see improvement in Garrett's ticks and mental issues once he gets better nutrition on board. We throw food at him as much as we can. He has a therapist/aide here in our home 6 evenings per week to feed and help him, and still, he isn't picking up on the eating, even with one to one help and encouragement. Seems his eating comes in these evening spurts, and that's mostly it. He eats some breakfast and some at school, but given his level of physical activity, he should be cleaning out out pantry daily!!!

So there, I am excited to see if this can help our boy. It's the last thing I know of that we haven't recently tried. How I would love to see the wheels greased in that noggin of his and know that he has what he needs to learn, grow and enjoy life!! I don't care if he stays thin....but I want to know that he has what he NEEDS to power his brain and organs. For a Mito kid, thin is okay. It means less to have to power with the limited energy resources. But greying-out power to the brain...not cool.

So the consensus, with the man I trust most with Garrett's health, was to get a g-tube placed within the next month along with a skin biopsy that can be used for future testing and possibly NIH EPI-743 research. We will fly back to Seattle for that to all happen at once and probably be there only a couple of days.

On a totally wonderful note, Garrett and I had a blast on our 18 hour trek to Seattle. We found the LEGO store! We bought a LEGO set and spent Monday night in our hotel room eating McDonalds (Garrett ate two nuggets and drank 1/2 his milkshake) and building a LEGO set together!! It was so dreamy to just focus on him and have no distractions or duties aside from him. Then after his appointment, we found a Chuck E Cheese and played a game and ate (a 4 inch section of a breadstick for Garrett). Next, we headed to return the car and fly back to Boise where we took ten minutes to play on the Boise airport's little play area because we missed it on the way out of town. We got home in time to play the Wii for a bit, chase his sisters around, let Daddy-O play the tickle game with Garrett, and Garrett slept like a rock!!! He did struggle to settle down for sleep, but I think he was just excited to be home!!!!