Celebrating Inchstones: GI appt

Thursday, February 17, 2011

GI appt

Asa had a GI appt yesterday. Once a month a GI or GI nurse practitioner comes from Vandy to a clinic in our local hospital. Saves me a 5 hour round trip drive!!! Our first GI left Vandy and we switched to a female Dr. that I like but I love the NP that comes here! She is soooo down to earth and easy to talk with. She has followed up with questions or issues that we've had to leave hanging at the appt.

I also love our local clinic because Asa started getting weighted there when he was discharged from Vandy with the NG tube at 4 months old. We did weekly weight checks for ever! The sweet nurse even commented yesterday that she remembers the day she got the call from Vandy saying we were coming in to get a baseline weight as we left Vandy. So each time we go it is a little like visiting friends!

And after all those weekly weight checks and weight worries, I'm happy to report that Asa is sitting happily on the growth chart! He is at 40%! We tried so long just to get him to the 3% mark!!! Unfortunately he isn't growing longer and that throws his BMI off! He is 32 lbs and 34 1/2" long. For the last month I've tried to keep him down to 3 cups of pedisure a day plus whatever food he eats during the day, which isn't a ton but some. From now on I'm gonna try even harder! No wonder my back and left shoulder kill me! I've finally got a chunky monkey! Oh, and since he is over 30lbs he had to be weighted on the stand up scale. Except he doesn't stand up! It was so cute to see him sitting down on the scale. I should have taken a picture!

Asa was pretty great the whole appt, especially considering I didn't have a paci for him. We've been trying to keep the paci away unless he is tired, hurting or screaming! There is always one in the car seat though. Or in the seat the car seat sets in . Or in the floor beside the carseat. Or in the diaper bag. Or in my purse or even pocket!! Except yesterday!!! He was fine during the BP check, the weight check, the height check, the waiting. He was really good. Then the dr came in and turned on the sink to wash her hands!

Asa loves water! Like OCD loves water!!! He had a fit wanting in the sink. And that is partly my fault bc I've let him play in the water at appts before bc he is usually naked and getting poked and prodded! This time he was fully clothed and no sticks were coming! No matter to him!!! He set out screaming!!! Really screaming!!! And when I didn't respond he started hitting me and then hitting himself. I had 2 choices, get him naked and stick his hiney in the hand sink (which would only feed his fire!) or just deal with him. I chose the latter and we just talked over his screaming and fit! I do feel bad for the other patients though! This really seems to be a new way of life for Asa and us. I keep writing blogs about it in my head but don't put them on paper. Maybe soon though. No promises though!!!

So the GI appt was great and we go back in 4 months!!! Sure beats weekly weight checks!!

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!