Celebrating Inchstones: First ER trip

Tuesday, March 12, 2013

First ER trip

I'm blogging from Jackson Madison County General Hospital and its 5 am. We got settled in at 3 after getting here at 10:30 last night! This may be dry and boring but it's mostly for my memory.....plus I've only had 2 hours sleep !

Asa ran a fever all day Monday. I didn't take his temp but I knew he felt warm and gave him ibuprofen. He was kinda tired all day but there was no coughing or pulling at his ear or obvious sign of illness. He didn't eat but drank 2 cups of his formula.

I took his temp around 4pm. The thermometer is sooo inaccurate under his arm and I did a rectal. It was higher than I thought so I sat him on the couch to get an ibuprofen. He puked all over everything! At bedtime, 7ish, he went to bed normally but then he started a weird cough. We thought he was puking. I went to get him and he was in bed, drawn up and shaking uncontrollably. I took another rectal temp and it was only 99. We noticed his finger tips and lips were blue. He was coughing, yawning and gagging all while shaking. We bundled him up and u tubed in some homemade Pedilyte. He handled it so we did some more. He had 60mls in all. Then he started puking!

I called the ped who said to go to the ER. After the fluids and puking he was looking better. No shaking, not as blue, he was squealing and fussing. Except his temp was 102.7.

At the ER the flu and strep test was normal. He was slightly dehydrated. The chest X-ray showed a slight upper respiratory infection. His O2 was 95%. They are taking this mito business very seriously though and admitted him.

He's in the PICU step down unit. His temp was 102.2 at midnight. At 1am it was 100.2 and now at 5am, it was normal. His O2 is perfect now. They didn't start and IV and fluids. He drank a little Pedilyte and I tubed in 4oz. He's had several diarrhea diapers. The last thing they said was a rotovirus test.

He has been amazing! He was wide awake until 3am. He lay in the bed listening and watching. In the ER he played in a basin of water and jumped on the bed. He sure didn't act like he was sick. I really thought he'd have the flu or pneumonia and they'd fix him right up. The ER doc mentioned a seizure. We'll see what the peds doc thinks in a little while. I think (hope and pray) that he is fine and just had a crazy fever! That's possible, right! And in my crazy packing I remembered several important items but we got here and I'm out of wipes! Not even in my spare stash places! I was using wet paper towels until we got to the peds floor!

Oh and as we came down the PICU hall I heard a familiar voice. The school nurse that took such great care of Asa is now here!!! I was soooo happy to see her!

1 comment:

Anonymous said...: Wow! We will be praying for Asa (and you and Barry) today! Trust it is just a wierd virus and no more! Love to all. Mrs. Margaret; March 12, 2013 at 10:14 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!