Sunday, August 3, 2008

PICU, part 3

Noah is back in the PICU.

He had a really rough morning that ended with a slight obstruction in his airway and high carbon dioxide levels.  They have put him back on a ventilator and he is breathing much more comfortably now.  His numbers are back to normal but the trauma of the morning has resulted in a lot of fluid build up in his lungs.  He is receiving treatment for this fluid every 4 hours and we are hopeful that much of it will be cleared up by tomorrow.

We have a lot of questions and very few answers.  

One line of thinking is that Noah's digestive issues are continuing to plague him.  We started feeding him via g-tube on Friday night.  We found a middle ground with the doctors regarding his feeding regimen... not nearly the increase in volume that they were wanting but still a fairly ambitious plan that tested his stomach capacity.  This was potentially our undoing.  In hindsight, it seems that Noah started getting fussier yesterday after we hit the 3 ounce mark in our feedings... and then we used a continuous drip over night.  All of that formula may have encouraged some reflux to sneak up past the fundoplication and add to the secretions that have been his nemeses from the beginning.  These secretions make breathing more difficult for Noah and reduce his ability to vent carbon dioxide effectively.

A second line of thinking is that Noah's leukodystrophy is causing him to lose control of the muscles that help him keep his airway open.  This is a much more discouraging possibility.  It is not uncommon for kids with neuro-muscular disorders to struggle with breathing and many end up with tracheostomies to control their airways.  Please pray fervently against this.  We obviously do whatever is necessary for Noah but do not feel ready to take this step anytime soon.  

We are exhausted but relieved but so thankful that Noah is breathing easier.  He is likely to be in the ICU for the next few days and I am making no predictions about when we might be going home.  

“You must never confuse faith that you will prevail in the end — which you can never afford to lose — with the discipline to confront the most brutal facts of your current reality, whatever they might be.” 

15 comments:

kmurphy said...

Josh and Deb,

Bill and I are fervently praying for Noah and both of you. Please know that I am keeping up with you guys via Judy. If you two need ANYTHING please just let us know. I know God works miracles every day and believe that Noah is on his list!

Beliving in miracles and healing,

Kim and Bill Murphy

Becca said...

Oh Deb, we will pray for Noah...

Anonymous said...

Praying for all of you constantly and with faith that God will hear! Linda

momma's heart said...

Oh, my heart goes out to you! I will pray as you requested for Noah, and for your strength and endurance. God bless you!

P.S. I found your blog through Jennifer at Candle At Both Ends.

patsy said...

Praying,praying for Noah, for you, for the docs and nurses. Patsy

The Wagners said...

Josh, Deb, Noah,

Noah is the first thing Michelle and I check when we hop on the computer. Please know that we and countless others are praying, hurting, and sometimes celebrating with you everyday. Stay strong in Him, it is the only way.

Love,

The Wagners

Bill and Melodie said...

Praying for sweet Noah and for wisdom for the doctor's and you guys as you move forward in his treatments! You two are amazing parents and I will quit complaining about having to live in Guatemala with my daughters and be thankful that I can be with them!

Anonymous said...

Deb and Josh, I am not going to pretend to know how you feel but I am going to make you both promise each other that thru all this you will know the wisdom of God and turst with your soul what he has in store for you as a family. I have never been an outwardly religious person but I believe you must give over to God all of your fears, pain,anger and hurt in order to find true peace. It is certainly not fair for Noah and you guys to be living this exerience yet God has chosen you all for an undisclosed reason we may not know for a long time to come. Every time I see you I try to take away a little of your pain so you do not have to carry it alone, but the Big Man upstairs is better at that than me for sure. Promise you will take care of each other and continue to find happiness in each day in each other. That is my prayer for you. All I know is Noah is a very lucky little man who brings joy to all he meets.

With much love,

Judy

Fern said...

I am trying to soak up some of your pain through the monitor and hold it for you.

I am still praying for you guys and for Noah.

erin said...

Deb, please know we will be on our knees for you guys. Love you.

Anonymous said...

Deb and Josh,
My heart was heavy when I read that Noah is back in PICU. I will pray fervently that tomorrow will bring good news and much improvement in Noah's breathing and feeding. Please know that there are many, many people admiring your courage and faith, thinking of you often, and praying for sweet little Noah.
Love, Kathy

Christy said...

Keeping Noah and your family in my prayers. We've been there. I wish I lived close and could bring you a love basket at the hospital. I'll pray fervently about the airway.

Anonymous said...

I'm praying for the little guy and your family here in st. louis. Never thought I'd see one of my "work books" on your blog...but it is SO true.

Matt Ryan

Anonymous said...

Josh & Deb,

I am praying with all my heart and soul for sweet little Noah - and for both of you. Your faith continues to inspire me. God Bless you.

Love, Diane

Kim Marsh said...

We continue to pray for Noah, for healing, for strength for you and Josh, for wisdom for the Doctor's...

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