Wednesday, April 4, 2012

Not the day we expected... (4/4)

We prayed that God's will would be clear today, and that He would orchestrate the events of today.  Well, apparently it was not His will to have Thatcher try nasal cannula for a second time today, that day appears to be tomorrow at this point.  In addition, it was not His will that we speak with neurology, that will be happening at 6am tomorrow morning.  This could feel like a very frustrating set back, and to be honest this afternoon had some ups and downs, but if we truly believe what we pray then there is a reason why neither one of those things happened today, and we will trust that it will be glorifying to God.  Had we started nasal cannula yesterday morning (Monday morning) which was the original plan over the weekend, Thatcher would have had fail number 2 put on his record, due to his phenobarb level dropping too low again.  In hind sight, we can see why God did not allow him to begin nasal cannula on Monday, so we are trusting in Him as to why the expected events of today did not happen.

As we mentioned just above, Thatcher's phenobarb levels dropped again, they were at a 44, which the doctor was OK with initially, but just before he was to get put onto nasal cannula, Thatcher showed us that this level was not high enough to control his seizures.  He seized pretty consistently for a couple of hours, which as odd as it may seem, we believe was orchestrated by God.  Here was Whit's post on facebook:
Soo even though thatchers phenibarb level dropped down to 44 and he is having more clinical (noticeable to the eye) seizures the dr. has decided to try thatcher on nasal cannula again because she doesn't think the seizures are as severe as last wk and won't interfere with his breathing (even though she wasn't here last wk and didn't see the seizures) as you can imagine I am quite anxious, just imagining our nightmare of last week happening again. Please pray for God's protection for our sweet baby and that God orchestrates the events of today so that they are all in His will and not our own (because I'm ready to climb into that crib, cower over my child and bark at the doctors to leave him alone)
As Whit walked back into the room, Thatcher was seizing and had just gone apnic, he had one of his blue spells.  Because of this, we were able to speak to the doctor about postponing the nasal cannula transition.  The rest of the afternoon Thatcher rested, the seizures are still present, and his maintenance dose has been increased, but Thatcher has been much more relaxed and at peace this afternoon and evening.  Because the seizures are still present, we may have to get a loading dose tonight, but regardless the Dr. wants to try nasal cannula tomorrow.  Honestly, we don't know what to think, or what to expect.  They said they wanted to make sure that Thatcher had a good steady level in the 50's before they tried nasal cannula again, and we are sitting at 44 today, and don't expect it to get into the 50's before tomorrow, and we haven't had a steady level yet.  With that said, we continue to pray that God would continue to orchestrate the events of each day so that it is only by His will that each day unfolds.  It was obvious it wasn't supposed to happen today, so it didn't.  So while we can't say with any certainty that Thatcher will be trying nasal cannula tomorrow, we can say in absolute truth that God is in control, and He will continue to be.

Our prayers have not changed.  We are praying for the seizures to stop completely, and for Thatcher to have a strong open airway.  We continue to pray for absolute and complete healing. 
I am the Lord, the God of all mankind.  Is anything too hard for Me?
- Jeremiah 32:27
This is the God we serve, and we believe in.  He is able to stop seizures that medicines can't control, and to generate brain tissue where doctors say it's non-existent.  We will wait, faithfully, with hopeful anticipation to see how God continues to move.  To Him be the glory.

7 comments:

  1. God you created every cell and fiber of Thatcher's little being. Nothing is too hard for You, nothing is impossible for You. You've counted every hair on his head, and You breathed life into his body. God we see you moving and orchestrating this little boy's young life. Continue to be Thatcher's strength and his rest. Lord, open Thatcher's airway and breathe fully into him, healing him from the inside out. Allow this family's faith in You to make him well. Allow this family to continue to be a witness to the doctors, staff, patients, and families in the hospital and to all the people who You guide to read their story. Lord, fill that hospital so fully with Your presence that every person there can feel You and long to know You! Open the eyes of their hearts Lord! Show us Your glory Lord! Our hearts cry out for You to heal Thatcher Lord- hear us, Lord and grant this desire and glorify Your holy name through Thatcher.
    In Jesus' precious name, Amen.

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  2. I pray for your family and your sweet Thatcher both day and night. Every time I think of Thatcher, this verse from "Because He Lives" comes to my mind.

    How sweet to hold a newborn baby,
    And feel the pride and joy he gives;
    But greater still the calm assurance:
    This child can face uncertain days because He lives!

    Thank you for sharing your journey and for allowing us the privilege of praying with you and for you.

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  3. We've never talked before (I found your blog by chance through a prayer outreach for y'all), but my husband and I have two very young girls at home and my mama's heart just breaks, loves, and earnestly prays for you. Your story has inspired us so much with your love and trust for God and his healing affects on your son. Please know that both of us (yup, I give me husband updates on y'all) are praying for your little boy. I pray one day you will be able to take him home and love on him every day. Stay strong and know many prayers are being said for you.

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  4. Still praying for your miracle and the complete healing of precious Thatcher! May God's healing grace surround all of you and give you renewed energy and strength to endure this trail. May God heal sweet Thatcher completely and give him an amazing life. Your journey is touching so many people and showing them that God is in control and can perform miracles and things so beyond what we can imagine! May God richly bless you and your family. I continue to lift you up daily in prayer!

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  5. Praying for strength for you as a couple...for endurance and an unwaivering faith that knows that "our God can do immeasurably more than all we ask or imagine, according to his power that is at work within us".

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  6. Praying still for little Thatcher and for all the family. God is ever present and in control as you all so firmly testify to. God bless each & every one of you. Stay strong in Him.

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  7. I hope everything works out for you and your baby my Niece is also going through the same agony as you her daughter Ruquaya was born with Neuronal Migration Syndrone. She has been in the hospital since birth she is only three months but she has so many seizures daily which the Drs cant control she is on so much medication with the fits some lasting 45 minutes,i pray daily for the baby to get better and that the seizures stop i will also pray for your child.

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