Friday, December 3, 2010

::Rock:: *Noah* ::Hard Place::

These last few days have been extremely hard. Noah is not doing so well. We have weaned down his Atavan over the past 3 days and his withdrawals are getting worse. We are working to help him get comfortable but it is very difficult to watch him suffer. NO child should EVER have to go through narcotic withdrawals! Unfortunately, Noah does. My heart breaks every minute of every day that we struggle to help him. It is a slow and excruciating process. I have to confess to you all, because I need prayers... My Faith breaks a little from time to time... just pray the God continues to give me the ability to make it through day by day. It is easier to ask God "WHY?!" then to fully give it to Him and to trust Him. I am being VERY honest when I say, "I am NOT as strong as you all think"! I faulter... sometimes on a daily basis... sometimes I feel like I can't hang on any more, but that is when God tightens his grip even more. He allows me to be sad and in the pits but He NEVER leaves! He is there in the pits with me... crying with me... showing me signs here and there that His Love is GREAT and He is working! He always gives me a glimmer of Hope... even when I am too down to notice it. But once I am out of my 'funk' I realize that He was ALWAYS there! He ALWAYS is giving us signs that He is there... we are just too absorbed in the moment to realize. Many have asked me how I have stayed so strong in my faith when treading through these murky, treacherous, painful moments... how they don't know how I do it... how they can't imagine being in our shoes or KNOWING they could NEVER do it! That is NOT true! God is the only one who is able to do it... and He shares his ability with me and Aaron. If it was in His plan for YOU to walk the same path, He would share it with you also. So it is NOT that I am able to do this... it is that God has chosen us for whatever reason and he is giving us the tools to make it through. He is pouring out His blessings... we just need to make sure to catch and use them. He is doing the same for you!!! He is giving you abilities left and right... different ones than what Aaron and I are given but to me it is all the same. We KNOW God has His perfect plan for ALL of us. We just don't always know what exactly it is. I pray that God will give you strength and determination to follow!
With that being said... here is an update on Noah....
Last night, Noah kept showing movement that was concerning. He was showing signs of seizure activity last night and the doctor ordered an EEG test. The test was run for 45 minutes but during that time, Noah was not doing any of the movements he was showing prior to the test... SO... no seizure activity was detected. If he still continues to show those signs, another test will be ordered. So far, he has not done the same movements as last night. Dr. Hoffman just came in because we thought he was starting to have one of those episodes... although not nearly as close to the ones last night. Dr H looked in his eyes, moved his arms in a coordinating motion, and lifted his jaw, etc. He said this is not a seizure but it is like he does not have the right balance of drugs (i.e. he could be under too much and his body is just having a reverse effect). He said he wants the nurses to avoid giving him PRNs as much as safely possible but instead to try doing the coordinating movements as kind of like a brain distraction. He also said that when he gets in these agitated states that MORE stimulus could actually help him rather than giving him PRNs. His explanation is that when you create more stimulus, we are telling his brain to stop focusing on flailing his body or the agitation but to focus on something else. It makes a lot of sense and I am praying that it helps! He said he knows it is and will be hard to watch but it might just be what his body and mind need. I like this plan.
Noah's BNP is starting to come down... 1600! Still high, but Praise God it looks like it is slowly getting better. His liver and pancreas enzymes are elevated so an ultrasound was done to look for stones or sludge... no results have been posted yet.
His renal and cerebral saturation levels have also been down for reasons still unknown.
Noah has yet to focus his eyes... still stares and doesn't really follow movement yet. Please pray that this improves.
While I was taking a break away from the hospital, Noah was started on foot splint therapy. From being in the bed for 4 weeks, his feet have begone to drop causing his muscles to tighten. So he now wears foot splints throughout the night and on/off in 2 hour increments during the day.

::Sigh:: I think I am done with my update for now. I am emotionally, physically, mentally, spiritually exhausted. Until next blog!

3 comments:

Stevie said...

You say your are not strong. You claim that you falter, that you question, that you don't understand. But the fact that you allow God to move anyway, that you listen to that small voice that brings you back into the arms of the Lord shows you are strong. A weak person would give up. A strong person fights! You are not giving up. There is nothing wrong with asking God why. He just may, someday, tell you the answer. My heart breaks for you and Aaron. I wish there was something I could do! But I hand you over to the Lord daily in prayer, and He is there. He does cry with you, as you said. He holds up your hands when you have no strength.
Love ya, Momma! Praying hard!

Anonymous said...

"Just enough light for the step I am on".......that is a book I read a while back and that is exactly what you have. Each moment seems things change and then it seems there is no change for long periods of time. We are praying and God is holding you three through this journey. He is preparing you for what He has prepared for you, never forget that. We don't just pray at bed, or in the morning....but many of us are praying all through the day and night! This is very possibly a spiritual battle for all we know and the Holy Spirit IS interceding on your behalf! THAT IS POWER!!! We love you! Ben, Christy and the Girls (and Landon too)

Anonymous said...

Debi, You are stronger than you know. I often pray, "Lord I believe, Help me with my unbelief!" The Christian walk is not for the faint of heart and this is a perfect example. I'm sure Mary had great difficulty watching Jesus suffer on that cross even though she knew in her heart that God was in control. You are ministering to us all on this journey with your authentic heart and it's "better than a Hallelujah sometimes." Jennifer Poppler (MOPS)

About Me

My photo
Welcome to Noah's blog! We thank you for following us on our God-led journey and thank you for all your thoughts and prayers! Noah was born June 22, 2009 with many anatomical birth defects and underwent his first major surgery when he was just 4 days old. He has been in and out of the hospital since day one and has had a total of 4 major surgeries to date, with his latest one being the most extreme and difficult - his first open heart surgery on November 4 and December 17th, 2010. He is a warrior and this is his journey...

He is getting so BIG!!!!

He is getting so BIG!!!!
Getting a short break from his O2 :)

Grab Our Button!

Photobucket

My handsome men!

My handsome men!
Powered by Blogger.

Me and my boy :)

Me and my boy :)

Dec. 6, 2010

Dec. 6, 2010
I got to hold Noah!!

Followers

Blog Design By

Photobucket

Blog Archive