Celebrating Inchstones: Reflux woes!

Wednesday, February 24, 2010

Reflux woes!

As predicted, the Nexium wean forced on Asa by the insurance company isn't going so well! He woke up last night. Then this morning he was puking. And PT was a bust! He was hurting again tonight and didn't want his bottle. We let him go to bed without it. There really is no point in forcing it in when he is so bothered already!

The GI called in some Zantac but it treats differently than the Nexium so I don't expect it to cut all the acid. Plus that stuff tastes awful! I just put it straight into the tube and avoided the mouth all together. It is really funny because Asa usually takes his medicine with ease! He won't open his mouth for a spoon but start at him with a syringe and he opens right up!

And I have a new definition for self-feeding! Asa will take an extension tube and put the end up to his tummy. I really think he is trying to plug himself up!! This afternoon Anna was trying to plug him up and he was resisting. He fights only because he wants the tube!! But she didn't want to touch it anyway so she was pretty jumpy! Anyway, she didn't twist the tube to lock it onto the button and Asa pulled it right off, making the Pedisure go flying on Anna! I was laughing so hard!! I'm trying to train someone else to use this stuff so I'm not the only one who can hook and unhook him! At this rate though, Asa might get it before Anna!! I can't say much because I used to be just a squimish as she is, maybe more so!!!

As I said, Asa didn't participate in PT much today. His PT suggested someone from the ins. company try to keep him while he was on this wean!! But, she called back this afternoon to see if Asa could participate in a short video at the center tomorrow! There is a fundraiser coming up and last years funds where used to purchase the equipment for letting the kids walk on the treadmill!! I told her I was fine with it but Asa might have other ideas!! He was very vocal in the PT gym today! Hopefully he is feeling better tomorrow and they'll get good video!

Asa was pretty opinionated all day today! We went in Target to get the new med. I put him in his Kimba because he was having a hard time. When we came out there was a buggy right beside the van. Asa loves, no....LOVES, buggies. He reaches out to grab other people's buggy when we pass. So he is pitching this fit while I try to get him in his seat. I told him he couldn't have that buggy but when we stopped again he could ride in the buggy. Of course, I used simple words but you get the idea! He totally calmed down!! So I said, "Do you want to ride in a buggy?" and he went "ah-ha"! Is that a word? It was kinda like a sigh but there was a definite "uh-ha" sound!! I really, really think he understood me! And yes, I let him ride in the buggy at the next stop!

1 comment:

Meghan Clement said...: Hello Kim and Asa.
I am sorry to hear that the Nexium wean is not going well. I think it is so unfair that insurance companies can make the decision for you that something else might work. I liked the suggestion from PT to have someone from insurance take care of Asa while not on the Nexium. I hope you guys can find a good solution to this problem. Have you ever discussed a fundoplication with GI? I KNOW it is very invasive and scary, but it was honestly one of the best things we could have done for Eric. I don't know how you would feel about it though. It is so great that Asa is going to be a "movie star" for the Rehab center. I hope you can get your hands on a copy and post a link so we can all see it! Many blessings and prayers are being sent your way!

Love,
Eric and Meghan; February 24, 2010 at 10:00 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!