Celebrating Inchstones: Think before you speak!

Friday, April 30, 2010

Think before you speak!

You'd think I would have learned my lesson by now! If you say your child has a skill and ask for it, he won't perform! The same holds true for the opposite as well! If you say something bad hasn't happened in a while, well, look out cause here it comes!

I just mentioned to someone that Asa hasn't had any gushers in a while. Don't get me wrong, he gets sick nearly everyday but there is usually warning. There is a pattern and a set of signs of what is to come. We can prepare ourselves. We can plug in a farrell bag and usually avoid a huge mess. Usually!

A gusher is different. Without any kind of warning Asa suddenly throws up. No rhyme or reason. You can imagine this is much worse than those daily pukes. We usually don't have enough time to get a bag. We might have enough time to get a cup. But now he thrashes around so much that he almost never hits the cup!

Asa has been doing so good and I just mentioned to some that he hadn't gotten so sick in a while. We were at the ball field tonight for practices (yep, plural, both Gracie and Cade had practice). It was nice out but windy and Asa doesn't do wind so for the first practice he stayed out in the van with Barry. We opened the back and folded the seats down so he could scoot around! I love a mini-van, it should be called a mini-home! We even set it up so Cade and Gracie could change in the car in privacy. And as long as only 5 of us ride, I can put Asa's chair in while it is still folded! Much easier on the back.

Anywho! For Cade's practice I thought I'd take him up to the field. It didn't seem too windy and wasn't crowded. Asa really liked it. He was tired and got a little crabby but not bad at all. The wind didn't bother him in the least! YAY!!!

Then on the way home, out of nowhere, BLAAAH! It wasn't pretty and he continued the whole way home! :( Poor guy! I hope it is one of those random things and not that he is getting sick. We've been so blessed this winter and spring to have very few issues!

Please continue to keep Cooper in your prayers. They are hoping and praying that tomorrow is the next step in the whole transplant process. When they transplanted the colon and small intestines they couldn't get him closed back up. They are hopeful he will be ready for surgery tomorrow to close him back up. I doubt any of us can imagine seeing your child sedated, in the ICU, with his new organs exposed (with dressings). Please lift this family up in prayer as this journey is just now beginning.

2 comments:

Heidi said...: Kim, sorry about the puking, poor kiddo. I just thought I would mention this, maybe this isnt anything new to you BUT has any of his Drs mentions CVS to you? Cyclic Vomiting Syndrome is fairly common with mito kids. If he's having episodes of vomiting but yet doesnt appear sick otherwise, this might be whats going on.

Jack just had his Mito follow up on Monday and I told Dr. S about the increased nausea and vomiting episodes Jack is having now and he feels this is CVS. I dont know why I didnt immediately think of it before but Im convinced it is now. Because it comes in waves and he isnt sick otherwise. Do you have ZOFRAN onhand for the vomiting? Im trying to get some to keep at home because Jack has been missing so much school. His episodes are usually in the morning, which I read is common with CVS. Zofran is the only med that got him stop vomiting when he ended up in the ER a couple months ago.

Just thought I would mention it. I hope he's not getting sick, hugs, and prayers--
Heidi & Jack.; May 1, 2010 at 5:46 AM
Kim and Asa said...: Heidi, I thought about a long time ago but for some reason I discounted it. I'll have to go research again. Asa's GI has never really offered any reasons other than low tone kids throw up! We see a new GI this month. I hope she'll want to do more investigating.

And Asa isn't sick. He just got sick that one time and is OK now. I'm off to google!

I hope you can get the Zofran. Sounds like great stuff for these guys! I loved your blog about your appointment. I guess I never took the Drs. point of view into consideration. You are right, they are Drs. to "fix" things and it must be difficult to go to work each day and not be able to "fix" it!

Thanks for the help! Hugs to your kiddos!
Kim; May 1, 2010 at 3:18 PM

Post a Comment

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!