Thursday, December 30, 2010

Tank is empty and Sammy is smiling

If you are not up to date on where we are now with everything..scan on down to last night's blog and info about the news from the diagnosis.

Update this A.M.:
Sam had a MUCH easier night with nothing in the Tum Tum. He was even smiling a bit. We got to come off isolation status as all the viral tests came back normal. Not a suprise to me. I don't really think he had a big bug. I think the slight fever from the vaccine put him in a weak state and the mito issues led to a total breakdown, the GI of which is usually last to hit. So we will have to figure out a new protocol for vaccines..I want to say no to them altogether but all these mito docs say for all the problems mito kids seem to have with them it would be FAR worse if they got exposed to one of the diseases covered by those vaccines. EEECH..need help on weighing out that one.

We get the picc line this morning and they said he will be getting some gas for the procedure but hopefully that does not put him over the edge as in the past. That should be in the next hour or so and then he can get much needed TPN. They said a permanent medport can be placed outpatient under the skin for long term central line use but a Picc line can be kept for up to a year I more thing to service at home though.

No reflexes in his right leg today. I know not to focus on the neuro stuff when I am already so worried about the gut issues, the bradys and the resp distress but I always worry the brain will loose precious energy every time we get sick. For all his limitations he seems very smart to us. I read an article that said these kids can have neuro decline in the 2 weeks following an illness because the body is sending whatever energy it can make to the illness, diverting it away from the organs that demand the most and so that is when his body starts breaking down. Gotta have some fuel and when your body does not make fuel well, then you end up stuck on side of the road.. or in our case this year.. the pediatric ICU.

My understanding is his brain is always starved for energy which is why he has had diffused encepholopathy readings on the EEG. Maybe that can turn around once we start the new mito cocktail that was ordered. Those meds are intended to improve the bodies ability to produce energy on a cellular level.

NEED YOUR PRAYERS.. and not just for Sam to get better but on a different level for a huge issue that is hitting us hard. Our very fancy $1650/mth group insurance policy is terming tomorrow and we have applied for a new independent insurance policy also through BCBS and hopefully will be a more reasonable cost and not more than a mortgage payment as is the current policy. We left our current agent when he negatively told us that even though the law says Sam can not be denied for prexisting conditions, that the insurance company will find a way to deny us..that would be fraud in our assessment so we went with someone who will fight for Sam's coverage.

We have been slammed financially from every direction this year and we need some prayers for peace and control. If we could obtain nursing aid at home I would able to help more with Jason's business and so we are praying for a solution on that level as well. Thank you for all the prayers. Forgive me for the long posts..I am missing my mother so badly as she is way down south visiting my sister. She is deaf I can't call her so this is the only way to communicate. God Bless.


  1. Hi Amanda! I saw today that you had left a comment for me on my boys' Cb site. I apologize that I just now realized it! Things have gotten very hectic here this fall and updating the site was one of the things that fell by the wayside. I understand they are looking at a mito dx for your son. Do you live in FL? I personally know one of the UMDF ambassadors for FL and she is amazing. Her name is Amber Ferrell and she is out of pocket for nowm but will be back and avialable once the holidays are done. You can find her contact information on the UMDF website under ambassadors for the state of FL. If you have a hard time finding her info, please let me know and I will make sure she gets in touch with you.

    Another place we frequent for support is parent-2-parent. Google the name and you should be able to click on the link to find the support group boards. It is free to join and there are a lot of Mito families on the Mito support board there.

    Hope this helps! Please let me know if there is anything else I can do to help.


  2. keeping you all in my prayers! read your last post.. we received the diagnosis through email for Abigail as well (defects in complexes 1, 2, & 4, mitochondrial disease). Abigail had been sick from birth and wasn't diagnosed til 20 months old... we knew it was coming, but we still took it hard. hugs and prayers!