Celebrating Inchstones: Home Sweet Home

Wednesday, March 13, 2013

Home Sweet Home

I should've updated yesterday but I was soooo tired!! We were discharged at 2pm. We got home and were locked out of the house! Can I tell you how fun it was to be so tired, gave a full afternoon and evening still to go, need a shower to wash hospital funk off and not be able to get in the house! Thankfully anna had a key and we only waited 30 mins for her to get home.

Asa tested positive for rotavirus. They just wanted to do pedilyte and then see if he could tolerate a cup of formula before they discharged him. He was still having diarrhea but I told then we could handle it at home. The peds doc took a detailed history and called Asa's Vandy doc to be sure he didn't miss anything. It was really great for the peds doc to tell Dr Tyler that Asa was his first mito patient in 32 years of medicine. It's not uncommon to met docs that don't know mito but they usually try to play it off or use ancient info to make assumptions that are sooo wrong! For instance, a lot of docs assume Asa can't see because there is a form of mito that affects the eyes. Apparently it's taught in medical school. Anyway, Dr. Tyler told him that fluids and sugar should be monitored closely. He also told him that all mito cases were different and you treat each case differently. It's so common to find docs who have egos too big to work together but thankfully this was not the case this time!

Since Asa was puking and pooping they took precautions and gowned and gloved up each time they entered his room. They left a stethoscope and thermometer in his room too. They were trying to keep Asa's germs in his room but I saw it as they were keeping other germs out of his room! Hospitals are GROSS!

Asa has done well at home. I tubed in small amounts of pedilyte and he handled it fine. He had a diluted cup before bed and one this morning. So far so good. He did wake up covered in hives on just one leg this morning! I have no idea what that means! I gave him some Benadryl and he's itching less.

I'm looking forward to a normal, regular, routine day around here! Maybe we'll find one soon! :)

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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!