Celebrating Inchstones: Asa is sick

Wednesday, June 23, 2010

Asa is sick

Asa pukes every night! How is that for an opening line!! And I mean he pukes, not spit up! We kinda get used to it. The Reglan helped for a while but now it doesn't seem to be helping.

So tonight Asa took 2oz of Pedisure from his straw cup, sat the cup down and puked. Not so odd here, unfortunately. But when I cleaned him up he felt warm and limp. His eyes were red too. That is kinda odd. I took an underarm temp and it was normal. We almost always have to get a rectal temp to be accurate with him though. Since he'd been inside all day there was no reason for him to be so warm unless it was a fever.

So the night progressed to lots of dry heaves and noodle boy. He was oh so crabby too. He did doze on the couch for a while but I woke him up when I tubed in 2oz of Pedilyte. He kept that down for a hour so I tubed another 2oz. Hopefully he won't get sick with that. I'll probably try to tube 2oz more in before I go to bed. Unless he is sleeping on his tummy. Then I'll come up with plan B.

And if all of that wasn't enough.... I emailed Houston today and found out Asa's IgG level was low. I've heard talk of that but I'll have to read more cause if I read ahead in the book, I get confused! It is nothing urgent so next time we go to Houston we can add immunology to the list along with GI. You see how this works don't you! I don't play card games but it seems like we already have a gin rummy or full house or a straight or something at Vandy so now we are collecting specialist from another hospital, heck, even another state!!! ROOK!

And finally, Vandy called to schedule a 3 day EEG! 3DAYS!!! Dr. K said 23 hour EEG. I think our neuro is mad at me!!! First I tell him that 2 other specialist want to look further into something that is HIS specialty, then I push for the inpatient option instead of his suggested offer of an at home test, so he gives me what I ask for and then a spanking on top!! The scheduler did say that if they got the info they needed before the 3 days were up, we'd be discharged.

Now tell me if I'm wrong about wanting this EEG done inpatient. It takes us 3 hours, one way, to get to Vandy. So we drive up, get him hooked up and drive back. The test measures for 2 days and then we drive up, unhook him and drive back. It would be nice to test in his normal environment cause I bet I could take him right to some of his triggers but that is a lot of travel and what if I screw something up and it doesn't read. Shouldn't someone be standing over me to make sure I don't mess up! Asa had an EEG at 4 months but at this time he was bad shape and didn't even use his hands much less raise them to his head. Now one of Asa's favorite past times is scratching his head! Boy, this isn't gonna be fun. So what do you think is the lesser of the two evils.....test at home and drive or test at Vandy and be inpatient? Maybe I should just flip a coin!

3 comments:

Meghan Clement said...: I say go inpatient for the EEG. This may sound crazy but you need Asa to have some "triggers" and not be in his natural environment. They need to look at all aspects, and I think that from what I have heard and read that Asa a lot of times has these "spells" after environmental triggers. Ha ha...crazy about immunology and Houston...weren't we just talking about that today? I hope Asa feels better soon!
Love,
Meghan; June 23, 2010 at 10:38 PM
gg said...: I fully agree inpatient is the way to go for all the reasons you listed.; June 24, 2010 at 5:50 PM
Clara-Leigh said...: Kim, so sorry Asa isn't feeling well. Hope you can get the stuff with Vandy all sorted out!! Still haven't heard back from Garrett's labs drawn....curious about the immune test results for him as well. His big issue is recurrent ear infections...on his 5th set of tubes....Big hugs to you both, and I am so glad my blog can give you a smile and laugh!!!!! Oh, there's a neat site where a lady makes jewelry for different causes. I ordered the Mitochondrial DIsease Awareness one and had it customized with Garrett's name and a disc that says "slow and steady wins the race." The artist also donates $10 of every sale of that necklace to the UMDF...cool, huh? Here's the link: http://peaceofmindjewelry.com/charity.htm
Thought you might like it!!! Hugs,
Clara-Leigh; June 25, 2010 at 2:48 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!