Celebrating Inchstones: ECHO and sick

Saturday, November 6, 2010

ECHO and sick

I was going to blog last night but instead I went to bed a 8:30! I had tried to get Asa down for over an hour and when Barry came to relieve
me I just laid down in frustration. The next thing I know it is 1am!! Isn't Barry the sweetest for letting me crash!

Moma and I left home at 8am yesterday headed to Vandy for Asa's heart ECHO. We hadn't gotten far when Asa suddendly puked. He wasn't crying or startled, he just puked. He hasn't done that in forever. Then I remembered back to when I got him up. His room had a terrible odor. I don't even know how the describe it. His cheeks are flaming red. He has no fever and seems fine. Could all these be connected?

He got sick another time in the car and I stopped and bought a new outfit since I'd left his spare at school. He seemed fine! He had his lunch cup and didn't get sick.

We got to Vandy at 11 and headed to the ECHO lab. An ECHO is just an untrasound of the heart. No poking, no prodding, easy peasy. Right?!!! Asa did fine the first half but then he lost it. I just hope he was ok enough to get a good reading! The test will be read and sent to our Dr. next week. I expect it to be fine. We left Vandy before noon and began our 3 hour drive home.

Asa continued to eat normally, play and seemed fine. Then at home he puked up everything he'd had ALLDAY!! Massively gross! After I cleaned him, the table, the floor and 2 chairs up, he seemed fine. He scooted and played. Barry gave him some watered down juice and as soon as it went down it came back up. He did keep down some Pedilyte before bed.

All of this could be stomach bug but since he hasn't been pooping it has me worried. His GI appt on the 17th can't come soon enough! Oh and it is at a clinic here!!!! We have no more traveling scheduled until March when we head to Houston.

I'm praying that today is puke free!!!!

2 comments:

Sarah said...: So sorry Asa is feeling ill. i hope that he is doing better today. I hope the echo comes out ok. Keep us posted.; November 7, 2010 at 4:11 PM
Unknown said...: When are you going to Houston? The Mito What? 5k race/walk is March 26.; November 10, 2010 at 9:47 AM

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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!