Celebrating Inchstones: GI appointment

Thursday, November 18, 2010

GI appointment

We finally had our long awaited, often cancelled GI appointment. And I fully intended on blogging about it yesterday but Asa would NOT go to bed last night! And I suppose this morning is a fine time to update too.

This appointment was with a nurse practitioner who travelled from Vandy to our local clinic. I was dreading going over Asa's history with someone new. It seems we are seeing a lot of new people lately. She had read up on him though and I didn't have to back track much. She is referring several questions to the nutritionist and is supposed to call me with those answers today. She was pleased to learn that we only have to use the tube a few times a week. Since Asa learned to drink from a straw this is how he gets most of the Pedisure! I love it!!! Why he wouldn't take a bottle or sippy cup I'll never get!

As for the poop..... Warning: graphic poopy talk, skip down a few paragraphs if that grosses you out!..... First of all she is amazed that we haven't dealt with this before. The GI system is a large group of muscles and we know Asa has muscle trouble. That's why his stomach doesn't empty and he has reflux. But his lower GI system has worked pretty well. He has had some spotty trouble but a little juice and miralax and he was back on track. Never has he gone 6 weeks with constipation.

What started out as hard, painful pooping has changed. He is now trying to hold the poop because he knows it will hurt. This is not a good thing to start! It is similar to his eating, the horrible reflux made him afraid to eat because of the pain. 3 years layer and we are still fighting against that! So we took an xray of his belly to see how full he is. She will call today with the results and a plan for a cleanout. Now doesn't that sound like a fun weekend!

We talked about lots of other stuff and I'm pleased with our plan of action. She was concerned about his "episodes" as I call them for lack of a better term. She wished she could help him not puke daily. Yea, me too! She asked if they were "behavioral". We've heard that word a lot too. I'm not sure how I feel about that! I think it is something that doctors say when they have no other ideas. You know, puts the problem back in the parents lap! And this doc wasn't saying that is the problem but I know several other kids who are having major issues and they are getting blown off by calling them behavioral issues! I think I'd have some behavioral issues all over those docs if that was me!! Keep fighting Christy!

****poop talk over****
But I do admit we cave into Asa often. Something about that ear
piercing scream! For instance, he LOVES water! So the keep him happy
at appointments I've let him play in the hand sinks. And this often
means his sitting on the counter in a diaper with his hands and feet
splashing in the running water! Yesterday I taught him howto operate a
water fountain. I figure it was a good cause and effect activity.
Don't judge me, if it was your ear drums curling up and dying you'd
stick him in the sink too!

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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!