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Friday - Post 1 (John)

11/27/2009

 
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Jessica and I both agree that today was the worst day in this entire journey - it also was the hardest day of our life. The PICU is very strict on visiting hours. They don’t let parents in until 8:30 am. We rested pretty well Wednesday night and had planned to sleep a little later, eat a good breakfast and be in the right spirit and frame of mind when it came time for us to see Noah. Our phone rang at 6:30 am. Noah's nurse said to me "he is awake and needs you here now - are you in the hospital?"  I was in the bed still - very sleepy. Jessica and I jumped up and got ready as quickly as we could and ran out the door. When we arrived to the unit they let us in 1 1/2 hours early just so we could help calm Noah down. And there began our eleven hour battle. Noah was crying, screaming, pulling on tubes and bandages, hitting and biting - but worst of all his back was arched and we could see it in his eyes - he was in pain.  We did everything we knew to calm him down. Had Elmo going, gave him juice, went through so many socks (his safety blanket is a sock) moved him around, sung to him even tried ice cream. They gave him morphine, Benadryl and adavan (?) to calm him down - in infant doses of course - and it didn’t do much good. We were told by his nurse that his sodium level was low so they had to do something drastic to get it back to normal, force his mouth open and inject salt water into his mouth and force him to swallow it. In those moments you have to grit your teeth and decide this is what's best for his life - just do it. He was a danger to the IV in the artery in his wrist on the right hand. As we removed it we had to pin him down and hold pressure to the artery to stop it from bleeding. This pressure hurt his hand.  Just when we thought it wouldn’t bleed, his nurse lifted the bandage to check and blood shot out of him like a water gun all over his face and pillow and us. I got weak at the sight of it (didn’t know I was a baby at the sight of blood) and Jessica grabbed me and got me out of the way to hold him down. His nurse finally got it stopped and taped it up. This upset Noah so much he began biting his fingers and hands and trying to hit the spot they removed the skull. So we had to hold him down. They had to put a tube down his nose to go inside his stomach so they could get the salt water inside him. We held him down for that as well. They had to start a new IV in his foot - three times they tried but his veins weren’t cooperating. We had to hold him down for that as well. All of this only fueled his frustration. And to top it off - he has been on steroids for six days so his anger was very amplified. For medical professionals, this may not seem like big deals - they see it all the time. For Jessica and I, not only was it the first time, but it was our only son. 

Jessica and I felt so helpless. He couldn’t tell us what was hurting. We couldn’t fix it and every time they came to do something needed for his recovery it involved discomfort and pain. He looked at us all day saying "Momma - Dada" and we could only stand by and watch him squirm in pain. After eleven hours - the staff told us we had to leave because the unit was closing to all parents. I didn’t understand how Noah would do any better without us there. Walking away from him was the hardest thing I have ever done. I pleaded my case to the head nurse asking if I had rights to stay by his side as a parent but they were solid on their policy. So off we went as his nurse attended to him by the bed side. 

It felt as if all of the life had been sucked out of us. We had done everything we knew to make him feel comfort and figure out his pain and take it away and we felt as if we lost the fight and let him down. There is no more horrible feeling I have ever experienced - to know your child is in pain and you can’t fix it.
I must admit that around 4:00 this afternoon I began to have weak faith. I was saying over and over to God "please stop his pain, please give him peace” I couldn’t see any change and I began to feel that anger start to rise in me again. "God, why aren’t you helping here? Why are you letting this happen? What’s the deal?" Jessica and I both admitted to each other in that moment that we were struggling in our faith. It is so awesome to be yoked together with someone who loves and follows Jesus. She helps me so much and is truly my help mate - the better half. Accountability means honesty with each other...and we were able to get our feelings out before we meditated on the wrong thoughts. In life - how you look at situations determines how you react to the situation. We had to get Gods viewpoint back in our eyes. That’s why God had us leave the PICU. 

 We had some friends visit at just the right time, to give us the encouragement that we needed at just the right time. And God refreshed us at just the right time. When 8 o’clock rolled around we had different hearts - ones that were no longer questioning, but accepting and trusting again. We still had to go back and hold Noah and assist the Nurses as they worked on him. We are so blessed by knowing his nurses are divinely appointed. Don’t believe me?? You should see them with him. We left him tonight sound asleep on peace with a nurse to care for his every need. We can rest!

I thought about Paul and Silas in the jail in Acts today. (Acts 16)  They had no real assurance of rescue. In fact Paul knew persecution very well and I figure he knew it was coming for them in the way of torture or death. As they were chained to the wall they did something so odd. They didn’t question or get angry or give up - they worshiped.  Jessica and I realize that we had a much different heart than that in the midst of today’s events. It is so easy to praise God when everything is good and you have good news (like yesterday) but if you’re not careful, when the worst day of your life rolls around tomorrow - you'll chose not to worship and choose to question - which only weakens your faith. And faith is what God is looking for when He wants to work miracles - like busting down a prison and setting people free - or calming a little boy who can’t tell anyone where it hurts. 

By the time we left Noah tonight at 10:00pm, He was sound alseep, rubbing his face with his sock and we were at peace. Peace with each other and peace with God.

“Let not your heart be troubled; you believe in God, believe also in Me.  John 14:1

This thanksgiving, I am thankful for my father in heaven, who loves me enough to Give Jesus for my salvation - A wife, who is everything I need to be complete, and a son - who God is using to teach me He can still work miracles, move mountains and change hearts.

Today we are standing on this scripture Romans 5:3-5 (New International Version)
3Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; 4perseverance, character; and character, hope. 5And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us


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    These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted. 
    Thank you for reading through Noah's incredible story, and for the prayers of those who followed along in real time as he battled a terrible disease. You are loved.

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