Monday, August 19, 2013

Asked For Discernment and Got It!

I am very thankful for the answered prayer for discernment. I know Garrett's ACE Malone surgery for his bowels as well as his teeth cleaning under the same general anesthesia, is scheduled for this coming Friday, but my soul was still not at rest. After a very frank discussion with his trusted surgeon, I wasn't feeling like I was ABSOLUTELY certain it was the right thing or time. Maybe it was just mom-xiety. You know, anxiety of a mom. But this past five days has shown me very clearly that something must be done, and with the amazing G.I. specialist on board along with a great pediatric surgeon as well as many Mito moms' experiences and after reading lots of studies and articles, it is clear that this is a good time and place and such. Garrett is now pooping so much he can no longer wear underpants but is back in pull-ups all day and his super-miraculous liquid-holding capacity youth diapers at night. And if he has meds dosed down any, he goes over a week constipated. I am fine with diapers at night. Not sure if that has potential to change, but the no undies deal is NOT popular with my sweet boy. He went as far last week to tell me he was going to pray to God to make him "all fixed like everybody else so he doesn't have to wear pull-ups." BROKE MY HEART!! He is truly realizing his differences, and it hurt my soul. And no, this surgery won't make him like everyone else exactly since most folks poop daily and don't have to spend an hour in the bathroom daily flushing their colon with a solution from the top down through a hole in their belly button. However, it will HOPEFULLY, if all works as it may, give him the the ability to be emptied completely like other kids on a daily basis, and limit his soiling by possibly 100 percent. THAT would be so so so so wonderful for him and for all of the rest of his daily care team!!!

It seems every time we have needed to go anywhere this past five days, there was poop everywhere on the way out the work, church, restaurant, activities, and then there was often poop while in public, and the sorts that has it running down his legs as it has blown through pull-ups even. And he is frustrated. He hates it, and it is often hard to hide my frustration with it...not with him, but with the poop. Then of course, there are the behaviors associated with the ordeal where sometimes he tries to dig the poop out of his pull-up or scratch "down there" because it itches when poop is on him. Then, bless his heart, he will be in the house and I may be out of earshot or in the garage and he will come to find me to tell me he has poop, and it will have pooled and puddled wherever he has walked.... truly a trail of mess. It has, just this past week, been cleaned out of carpets in our home's bedrooms, living room and through the hall and down our carpeted stairs. It is just plain gross, frustrating and sad.

So there it is, sports fans, DISCERNMENT!!!! Or maybe simply put, it's a huge slap on the face to me so I can feel confident with our choice to move forward now. I am thankful my little hero is still so well and so smily and happy!! He is a real trooper, and I pray this procedure yields the best possible results. We will not know if it is "working" at capacity for about a month after he is home.

He will be admitted to St. Luke's Children's Hospital this Thursday to begin I.V. hydration and a bowel clean-out. Friday morning around 10:30 the dentist will begin his work followed by the surgeon. So I am guessing they will take him to pre-op by 8:30 or so. Nurse tells me he should be inpatient for 2-4 days post-op depending on how he is healing and eating and how well we are doing accessing and flushing the tube that will remain in the hole/stoma until the site is healed properly and the tube is removed to leave a hole. Some of our friends are planning visits to entertain and distract Garrett over the course of the few days, and the hospital has a Wii for Garrett to use while he is there. His grandmother bought him a new Lego game for his Wii, so the bribe is that one the I.V. is in, he can have the game. And his other Grandparents come into town Sunday for a few days!!! FUN stuff, but a bit more challenging inpatient!! Wish us luck there!! HA!!!

Please consider praying for this situation in the following areas:
Prayers for the surgeons and other medical professionals.
Prayers Garrett can drink the bowel cleansing liquid and will not requite an NG tube in his nose to get enough into him.
Prayers everyone in our family stays well, not exposing Garrett to bugs pre-op
Prayers for him to not pick up any bugs in the hospital
Prayers anesthesia is safe this go-round
Prayers the dentist has time to get his mouth REALLY nicely cleaned!!
Prayers the ACE procedure is very quick and successful
Prayers for Garrett's multiple sensory issues allow his little mind to settle down and relax some about all of the new things that will be going on both inpatient and learning to help him do the "flushes" at home daily.
And of course prayers for our girls as they watch their little bro endure yet another bump in the road.

We are so thankful for Garrett's good health these days!! Above all, please pray for those Mito kiddos who struggle more daily than our little hero has in a lifetime!!!

Godspeed and I promise to update as things happen!!

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