Celebrating Inchstones

Thursday, March 11, 2010

Boy, that last post was pretty negative, huh?!! Somedays are just like that. I hate to see Asa in pain. I hate to have him puking. I hate to clean up puke. I hate to stop life to deal with puke. It doesn't take much to imagine that all this puking for the last 2 years is one reason he hates food. He barely know stuff is supposed to go in that hole, it is usually coming out! After this streak I'm wondering about things we could do differently. We don't see the GI until May. I'm hoping things are on an upswing by then. If we saw then this month there is no telling what I'd be begging them to do for him!

I know puke is minor for so many people. Puke is just an annoying fly in the grand scheme of things for so many. But to me it reminds me that things aren't right. It reminds me that our lives are different, changed. For some reason, using the feeding tube at meal times is normal. I have no problem plugging him in to get a feeding while we eat. I have very little problem with him not eating. That is normal. That is fine. BUT, when the puke starts flying.....that isn't normal. Makes me think of progression. Not a fun thought. I pray this flare up is because the insurance took away his Nexium. Now that we have it back, I fully expect him to go back to normal....right?!

And in these 2 weeks he is eating even less than before. Maybe the dots don't connect but it seems odd. He had cream of wheat, mashed up beanie weanies, cream potatoes, bites of bread. Now zero, zilch, nada. Even the yogurt and applesauce don't pass the test! So here we go starting all over.

I have a plan though. How many times have I uttered those words?! We have had set backs before when Asa has gotten sick (or something) and his motility has stalled or stopped. So now we have the e-mycin and while I'm not using it day to day, I think it'll work when he has a slow down. And since we have the Nexium back on board the reflux shouldn't bother him. As long as we can keep those two things under control we stand a fighting chance, right? Surely we do!

He had a dose of Nexium last night and took 2, yes 2, bottles of Pedisure at bedtime! I thought he'd get sick but nope, he was fine!! Now if we can only continue that trend!!!

No comments:

Post a Comment

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!