Tuesday, June 25, 2013

Update: FTT, constipation and surgery???

Oh where to begin?

First, we are now in that annual cycle of doctors' appointments for Garrett. At the pediatrician's visit that was needed for a well check, a camp physical and a required Medicaid physical, it was noted Garrett has dropped off the growth chart for weight again. He is 48 inches tall but 43 pounds. He was 48 pounds in December. He is officially "failure to thrive." So the next day we saw the G.I. specialist who recommended upping calories, adding an antacid in case he is having reflux again, and doing daily ExLax instead of only using it after he hasn't had a movement in 48 hours. Next, we will weigh him in again in about two weeks, and if no gain, we will add an appetite stimulant. Still waiting to see eye doc, heart doc, and surgeon. More about the surgeon in a bit....

Over the past three months, I was working to wean Garrett off of a couple of psych meds. He was doing GREAT in school as far as behavior, and he was even doing okay at home, so I thought it was a good time. Over eight weeks, I weaned him off of Risperidol, but apparently it's also an appetite stimulant in over half of the patients in studies. It appears it may have been keeping Garrett eating, so after talking to the G.I. specialist and Dr. Saneto's nurse a couple of times, we have decided to add more calories in every way we can. Keep in mind that in December when Garrett saw Dr. Saneto and he weighed 48 pounds, I asked Dr. Saneto about how thin Garrett looked, and he didn't want to push calories. He was happy as long as Garrett was growing UP.  However, the behaviors have been on the increase, and while the nurse said that could be from lack of calories, I feel that they are the tics and such for which the Risperidol was indicated. I was really so happy to stop that med, but I started it back today, and he was eating more already and had a super day. We tried to get some meds off the list, but no go.  Oh well.

Then there was a little shock when she asked if anyone had mentioned a surgery to help with Garrett's constipation. She mentioned a couple of choices for procedures that would allow us to take Garrett to the bathroom daily at a set time and administer an "internal enema" called an ACE. I have researched that and also have discovered one called a cecostomy. Both allow warm salt water and some other agents in some reports, to be put into the cecum and thus flush the large intestine daily, completely. As Garrett is getting older, he is getting more and more frustrated with pooping in his pants, wearing a pull-up when he needs to, and so on. He now sees that his peers, even the ones who are ambulatory in his special needs class, do not need that. The G.I. specialist is a brilliant lady whom I trust. She is very conservative. So I feel she has tried all she knew.....fiber increases, Miralax, ExLax, antacids, poop therapy, etc., and sees nothing has truly helped Garrett gain independence of his toileting. While this internal enema and spending an hour in the bathroom daily while a feeding bag and line drain warm water into my child doesn't probably sound like much fun to most parents, it sounds glorious to me compared to what Garrett suffers through right now. There is no balance I have been able to find for him, and he is so miserable. We will meet with the surgeon to discuss options this week or next. I will post more then.

Meanwhile, Garrett is loving Vacation Bible School at Deer Flat Free Methodist church. I am a pirate this week, and I am enjoying teaching the children about Mark 5:36 where, "Jesus told them: Don't be afraid; just believe!" as he walked up to the disciples, across the sea of Galilee when they thought Jesus was a ghost. We have a room Tim and Pam B. fashioned into the lower level of a pirate ship, and we even have kids walk a plank with the verse on it, reciting the verse as they walk so the words get hidden in their hearts!! We have had a few other kiddos and youth hang out with us this week to and from VBS and afterward, and that has been such a joy. HUGE thanks to my mom for taking Garrett to and from VBS so I have room in my car for all these other cool kiddos!!! And this verse resonates with me.....DON'T BE AFRAID.....

I will update more on Mr. Garrett as I know more. Of course, my mommy heart is nervous about where this is all going with surgery a possibility, weight loss, etc. I know all too well how things can and are predicted to go for my precious son, and I know there are so many people praying for him. I have to go to bed, wake, and continue throughout the day, praying for God's sovereign will to be what gives me peace.

I sign off tonight smiling because Garrett and I are having a slumber party in my bed tonight since Grouchy isn't home. I loved sleeping next to Garrett last night also, but it was troubling to reach over to rub his back or tummy or neck and feeling all of the little bones and not much else.

Keep praying for Garrett and all of the children in the world who fight mental and physical illness, abuse, or neglect. And by all means, hug your own kiddos a little more tightly next time and take plenty of snapshots of them in your daily mind's eye. What a blessing they are!!!