Celebrating Inchstones: Ups and downs

Tuesday, February 23, 2010

Ups and downs

Asa had OT today. He played in flour, corn starch and cornmill! Sounds fun right?! He liked it too. Until Jim added water! The horror! No, he really wasn't that bad but he didn't want to touch the paste! And what a mess....glad we got to leave and Mr. Jim had to clean up! LOL I know Cade and Gracie will love to play cook with Asa!

Then we went to get the WIC. Not usually a fun appt. and today ended up being no different! Things went better than expected at first. We were gonna get out in record time. Then I checked the vouchers. They didn't include Asa's Pedisure. I really could care less about the cereal and milk and juice. We NEED the Pedisure! The sad thing is that Asa was on the pump during the whole appt. We discussed at length the tube feeds.

In the end, we were there for 2 hours. Asa was fed and then got sick. He had on his Theratog suit and it is warm so I took off his shirt as soon as we got in. When I had to wait on them to figure out the Pedisure stuff, I stripped him down to his diaper. He never threw up and I didn't drain him but he gagged and gagged and then zonked out. I hate seeing him get so drained and depleted!

It took 2 hours, 2 clerks, 2 dietitians but we finally got his Pedisure. Turns out the "system" won't let them print over 10 vouchers. Asa gets 12 for 3 months worth of stuff. I asked them to just give us the Pedisure and forget the rest but the system or them wouldn't let that happen. They can only give out 3 months worth because their "population" tends to lose more than that. GREAT!

You might wonder why I'd dare bash a system that I utilize. First, I'm not bashing those wonderful workers. I'm sure they wanted to throw up their hands and give up but they kept on working. At one point the clerk was going to override it on her own because she couldn't find anyone to authorize it but she knew we needed the Pedisure. So those ladies got huge "thank you" from me! Second, this is what I have to do in order for Asa to gain weight, grow and stay healthy. He has to be tube fed. We are actually fortunate that Asa can have Pedisure. At least we can find that on the shelves when the WIC runs out. But the home health provider won't deliver it with his other tube supplies because we qualify for WIC. So every 3 months we go through this routine. Every 6 months we have to bring a boat load of paperwork with us and Asa goes through the ringer with the nurse. Every 6 months I have to get a new RX from the GI saying Asa needs Pedisure. All of this just to get the food to feed Asa. Then there is the fun stuff of the tube!! Next time you drive through McDonald's and throw a Happy Meal at your kid, say a prayer of thanksgiving!!! And that is my third point. Just be so thankful when feeding your kids is simple. When it doesn't involve hoops and red tape! I took that for granted before! No more!!

And on another frustrating note, Asa's Nexium got denied. The insurance is making him take a 2 week wean to see if he needs it. This is a good idea but we just tried it, on our own, a few weeks ago and it didn't go so well. So now he has no reflux meds on board. I noticed some him flinching and burping earlier today. Then tonight he was hurting before bed. Maybe I could make some calls and get this overridden but I was a little busy today! I'm just gonna try to ride it out and who knows, maybe our trial was hampered by something else. Maybe he really doesn't need the med.

But our day did end on a fun note! We went to IHOP for supper. They had free pancakes and only asked for a donation for Children's Miracle Network. The pancakes were yummy. It was very, very crowded but Asa was happy. As long as he was happy we could handle the rest!! Asa even ate some yogurt while we had our pancakes! YAY!!! If that would keep up, I could kiss that WIC and tube good-bye!

1 comment:

Christina said...: You should just get your case transferred to Chester Co. and Asa could come hang out in my quiet, albeit, messy, little office while you get your vouchers and I could kiss all over him!!! Haha!; February 23, 2010 at 10:07 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!