Monday, April 5, 2010

jonah update

Jonah is about the same health wise. I took him back to the doctor today, and Dr. B said that he has the beginnings of an ear infection (caused by his virus, apparently). We gave him his first dose of Amoxicillin this afternoon. He has lost almost a pound a half since Wednesday. If you have been following this blog for any amount of time, you know how hard we work for each and every ounce and how we have fought so hard to avoid a g-tube. You know the loss of those 21 ounces is KILLING me. He's barely eating any formula whatsoever, but does allow a few ounces of Pedialyte here and there. He probably had five ounces of formula today and about eight ounces of Pedialyte.

Thank God for Pedialyte!

He is sometimes having a wet diaper every six hours. Sometimes not. We are fighting tooth and nail to keep him hydrated. It is very draining, frustrating, and frightening. If we can't keep him adequately hydrated, he will have to go to the hospital for IV fluids. IV's are never a great option with EB kids, although often inevitable. Dr. B wants to check his weight again on Friday.

Please, please pray for Jonah - that he will begin eating again, will stay hydrated, and will begin gaining back the weight he's lost. I'm praying that this antibiotic will be our miracle.

I know it's just a virus and an ear infection, so many of you may not understand why it's such a big deal, but dehydration and malnutrition are the top reasons (next to infection) that EB kids get into serious trouble.

I'd be lying if I said it doesn't scare the sh*t out of me.

Eat, baby, EAT!

29 comments:

Alicia said...

Praying for sweet Jonah to start eating and gaining weight. Colds can be scary to any mom, but especially scary for you. I can see where you are coming from with not wanting him to go the hospital for hydration. I cannot begin to understand how scary EB is with getting an IV or coughing or being sick. Praying for you and peace tonight.

Tricia said...

I am glad the doctor was able to see Jonah today. I am praying for him. And for you.

Devon said...

i'm praying....i know how much those ounces mean to you...hang in there....

eat jonah eat!!

Kelli said...

Praying for sweet Jonah. Eat, eat, eat...gain, gain, gain!!!

Just Diane said...

Prayers are coming! We hope for a good report soon!

Sara said...

will he chew/sucks on a wet wash cloth (he may think its fun!) It isn't much liquid but its something and like I said he may think its fun!

The Hill Family said...

I'm praying for a speedy recovery. Eat Jonah!!! We are ALL rooting for you!!!

Stephanie said...

Praying hard for you and Jonah, Patrice!!

Libby said...

N. had the worst diaper rash in his life this morning, and my first thought was "This is just a small shadow of what Jonah, Patrice and Matt live with EVERY DAY." I'm so sorry Jonah is not feeling well and will definitely keep praying for him to eat, eat, eat! (And drink up, too!) Praying for you, too.

Amanda said...

Praying for you.

Sewconsult said...

Sending prayers & gentle hugs.
Beckie in Brentwood, TN

Stacy aka Fahiima said...

I'd be scared too momma! Definitely praying and believing that God will continue to bless Jonah and keep him safe!

Penny said...

Oh Patrice, I know how hard you fight to get Jonah to eat. It's so scary when our kids are sick but for you that fear must be magnified 10X. Praying hard here for Jonah and you and Matt.

I ope this spring weather can help blow some of the grams out of our houses!

Laura A said...

Hi Patrice-

We're praying fervently for Jonah to be healed quickly! Hopefully the antibiotic will kick-start him into feeling better. I can't imagine how frustrated/scared/worried you are - will pray for you to have complete peace as you take care of him.

...I really wish we could come up with an invention to heal this rotten EB!!

Love,
Laura

Shari said...

Praying for sweet Jonah! I can only imagine your fear! I am glad you are honest with us!

Sweet Jesus, please allow Jonah to be hungry and eat without pain. Please help his little body to be hydrated and nourished! And that he will gain his weight back. Please comfort Patrice and Matt. In Jesus Name, Amen!

Krystal said...

Patrice, I can only understand a tiny bit your struggles with getting food and fluids into Jonah, but I pretty much am begging God to help you give Jonah the best life possible. I know you do your best; I'm asking God to sustain you, encourage you, give you wisdom, and bless all of you!

Stephens Family News said...

Praying for you and for sweet Jonah!

lifelaughsandlove said...

Praying like crazy for Jonah to get better and for your sanity in the meantime!

~Amy

Our life is a bowl of Barry's said...

Praying Patrice..praying!!!

Mommy Attorney said...

Praying for sweet Jonah to eat and for Mama to have peace that passes understanding.

mooneyequalsmc2 said...

Oh Jonah, eat baby, eat!

We are going ahead with a g-tube at month's end for our guy ( not EB related ) but like you, people do not realize the dangers of malnutrition and, especially, dehydration for medically fragile kids.

I will continue to pray for complete healing for Jonah and that he will eat up!

Mindy

jenlar3 said...

Praying for Jonah!

Lari said...

Sorry about the ear infection. Hope the meds will make him feel better and start eating more. Praying for you all!

CastingCares said...

Praying for sweet Jonah. Also wanted to mention that my kids hated Pedialyte but loved Gatorade. Maybe he would drink more of it. Just a suggestion. Praying the antibiotic works quickly, and he begins eating again.

Jen Burns said...

Praying that most of the weight lost is water weight which will be quickly put back on God willing, once Jonah is well. Praying for strength and rest for all of you!

Pati @ A Crafty Escape said...

We are continuing to pray... here's hoping he's starts eating soon. Hugs to you!
P.S. LOVE those Easter pics!

Heather said...

Definitely keeping him in my prayers.

Brenda is SO Blessed said...

prayers for Jonah and his mom and dad! i pray for a baby that will be so hungry and eat a ton... and peace for a loving family

AngelWalker said...

What about popcicles? Yes, its like frozen koolaid, but would getting him to suck/nibble on one, help?