Celebrating Inchstones: I HATE mito....

Monday, April 18, 2011

I HATE mito....

This seemed to be the theme of my Facebook today. Various mito friends were going through different struggles and trials. I was having my own "I hate mito" moment this morning.

I've gotten pretty used to Asa's issues. Some are constant, some come and go and some just pop up from nowhere. And then there are a ton of issues that we have never had to deal with, for which I'm grateful! But this morning had me shaking my head in disbelief at how something so normal and random could affect my little guy so much. What would normally be no big deal is turned into a big deal by mito!

And so, I HATE mito because.....

Asa went to bed last night around 9pm. I heard him waking up and playing around 8:30 this morning. He never cried for me but I got him up around 9am. He was sitting up on the edge of his bed (love this milestone!). I gave him his Prevacid, cleaned him up and sat him in the recliner. I got his cup of Pedisure, which he gulped down by 9:30am! I offered an applesauce or a yogurt but he refused. He sat and played with his laptop while I did laundry and cleaned out a closet. Around 10:30 he started screaming in pain. I looked in here and he was red faced, doubled over trying to poop! I picked him up and comforted him but he was in pain, pushing and gagging from all the work to poop. He finally settled and I changed him. I changed a whole little half dollar size ball of poop! All that effort for nothing! I laid him back in the floor and went back to the closet. He never settled and started struggling again. This time while I was rocking and comforting him, he dozed off. Before he got all the way to sleep, I change him again....barely anything again. As I was changing him he dozed off. Once he was changed I laid down in his bed with him. He was gagging and coughing but was asleep in just a minute. He ended up sleeping from 11am-1:30pm. Just making 2 tiny poops was enough to completely deplete him and he slept for 2 1/2 hours!

I know there are a million other reasons to hate mito....and I hate mito for all those who struggle in so many ways. But this was just a big reminder that mito sucks in so many ways.

Asa made up for his lazy, sleepy morning this afternoon though. After we picked Anna up from school he played and played outside. He sat on the edge of the pool and kicked his feet in the water. I pushed him on the swing set. He bounced on the trampoline. He sure didn't want to come inside!! I can't say that I did either!

1 comment:

Unknown said...: i hate mito too!; April 19, 2011 at 8:48 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!