Celebrating Inchstones: Our new GI

Monday, May 24, 2010

Our new GI

Asa, Moma and I traveled to Vandy today to meet our new GI. Our old one left and while I really liked him and he had such confidence in me, he was reluctant to test and explore our options. Dr. A has already made several changes and I'm excited and hopeful that they will help. I heard for so long that we should just expect him to have issues with reflux, puking, constipation because of the low tone but doing nothing and just accepting it is hard! When do you give up the fight...NEVER!

Anyway, Asa made the trip fine! He was really very funny. He "mmmmmm"ed most of the way up and back! When we came thought thunderstorms and had to turn the wipers on full blast he really cracked up! He tried to eat his toes! He has never done this before! I had a hard time driving cause I wanted to watch him in the rearview mirror!!

So he now weights 29lbs. He has been at this weight for a while and it is 50% on the growth chart so he is nice and solid on the chart! This is the first time he has been this high!! The GI even suggested we hold back on the Pedisure a little!! So glad to hear those words!!! And I have tried this a few times but since he isn't eating orally, it is hard to be sure he is hydrated and blood sugars are good.

But she had a plan for the oral eating and puking too! Barry and I have thought for a long time that Asa's tummy doesn't empty properly. We've never really been able to get anyone to listen to our opinion though. Dr. A is putting Asa on Reglan. Hopefully this will help things flow better and Asa will want to eat more by mouth! Then we will use the tube less!! Music to my ears!!! It will be hard to see him not gain weight or consume as many calories! I think I've been reprogrammed to aim for calories over quantity and now I'll have to readjust! I'm soooo ready though!

The Reglan kinda makes me nervous because it can have some neurological side effects and since we already have neurological issues, it makes me nervous! In fact we avoided it until now. It was suggested before, by another Dr, and I didn't want to try it! Now I'm ready. I think Asa is bigger and we will be able to tell if it is working or if it causes side effects. Before he was just a jumble of issues. Now we seem to have the line untangled a little! Of course, we are praying we see NO side effects!

Asa is only 33in. That doesn't even hit the chart and he has been that way for a while. The first times he measured short, I thought it might be an error. But this has become the norm! Now Barry and I aren't tall, just average so we didn't expect a giant but I have become programmed to be alert to anything that isn't the "norm"!! Dr. A wasn't concerned so I'll just roll with that too!

We will follow up with a nurse practitioner in the clinic in Jackson in a few months. The GIs don't come anymore we really don't have huge needs so we can see them in this clinic and avoid the 5 hour drive!

Ok, now that the GI appt is over I can start planning the Houston appt. I have lost all ability to multitask and can barely accomplish one task at a time! Barry says it is old age! :)

4 comments:

Geetha Srinivasan said...: Glad to know that you are comfortable with the new doctor. And that makes a big difference.

Good luck and God bless.; May 24, 2010 at 11:14 PM
Debbie said...: Such a fine line trying to balance the puking, the poops or lack of, the emptying...you are doing a great job, and I find him to be quite amazing with everything he is able to do!
Glad the GI apt went well!

And YES, I will blog from Nevada...I need all of you too! (wink)
;); May 25, 2010 at 11:52 AM
All the Marletts said...: Hi kim,

I have been following your blog off and on since "meeting" you on the P2P site a while ago. Our daughter Lucy and your son Asa share many similarities. Lucy too has mito, complex I and III to be more technical. Her GI system is very affected and she is 100% g-tube fed 22 hr/day as well as a handful of cheerios given to her one at a time when we eat dinner. Her little tummy doesn't empty well at all (that's saying it nicely:), and her lower intestinal motility is even slower. Her GI doctor has really run out of answers for our girl, he lumps her in his category of "those metabolic kids". Recently we have a new doctor on our team who has given us hope and is willing to discuss options, motility meds being one of them.

I could go on and on...
I just wanted to "formally" introduce myself to you. So many things you write about are similar to what we are experiencing. By the way we have four kiddos too, Lucy being our youngest.

Feel free to check us out at http://www.allthemarletts.blogspot.com; May 26, 2010 at 5:49 PM
Kim and Asa said...: So nice to "meet" you too! I love your blog! I love the picture of her with the walker! I wish Asa would figure out he can hold onto that thing so he could move on!! He gets scared to hold it!!

And what is it about these 4th babies?!; May 26, 2010 at 6:22 PM

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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!