Sunday, May 26, 2013

Fearfully and Wonderfully Made

We arrived at the hospital at about 11 a.m. on the day of Noah's surgery.  We waited about 2 hours before they called us back.  They took Noah's vitals and we went through the usual steps and questions.  On my side of the family, there is a family history of an anesthesia reaction called Malignant Hypothermia.  It is a very serious complication.  For any of Noah's surgeries, they take the precautions necessary to prevent any reaction.  The machines have to be completely cleaned of any triggering agent.  I mentioned this at his last appointment to the doctor who said he would make sure it was noted everywhere.   However, I have discovered that no matter how many times you mention this, somehow it slips through the cracks of communication.  At a previous surgery, even though we had told several people, it was missed.  Had I not mentioned it, Noah would have been at risk.  I actually called four times prior to this surgery, and knew the doctor had noted it, but somehow it happened again.  So when this happens, surgery gets delayed due to waiting on cleaning the machines.  I was frustrated that this happened again.  Noah's doctor was also frustrated.  But it was what it was, so we waited another 45 minutes for Noah to be wheeled away for surgery.
He was so sweet.  He was taking pictures on his DS of all the people who came in the room.  He was very calm and relaxed.  It's like he has a supernatural understanding beyond his years.  It's amazing.  When they started talking about possible complications, which I had heard most of them before, my anxiety levels were rising.  It's the point where you feel like taking your child and running away.  But, I knew that the benefits far outweigh the risks.  Risk though, is always a scary reality, and it's never easy to listen to what "might" happen, even if it's a 1 in a thousand chance.  Throughout Noah's life, he has been on the other side of the statistical stance several times.  So I began to internally begin what Mamas do best, worry and wish that this was a decision I didn't have to make.
I stayed calm and strong for Noah, but as soon as they took him away, I told Jason I needed a bathroom to cry in.  I don't know why, but I like to hide when I cry.  So I went in and let it out.  Even though I was crying and sad, I still had peace.  I was anxious, because it's never easy to let your child go into an operating room, no matter how small or big the risk.  There is still a possibility of something going wrong, so it's near impossible to be content until you are holding them again.
So we ate lunch and came back into the waiting room about an hour and a half later.  Then it got to the three hour mark and we got a phone update from the nurse.  I was assuming it would be to let us know the surgery was over, but she said it was going to take 2 more hours.  She said Noah was doing great but that it took a little longer to get a good look at what was going on around the ear bones.  The doctor had told us that he wouldn't know exactly what was going on until he was inside Noah's ear, so I was thinking that it must have been really complicated!  I still had peace but I was really anxious to see Noah.
We got another update about an hour later and she said he was doing good and should be done by 7 p.m.  The last 2 hours were the longest.  I hadn't prepared to wait this long, but that's what it took.  At about 7, Noah's doctor came out to the waiting room and explained what he had found.  He told us it was the most complicated case he has ever seen.  There is a facial nerve that runs through the ear which we had heard about during the "risk talk".  If damage is done to that nerve, it can cause permanent paralysis of the face, and it would appear as though the person had a stroke.  He said Noah's nerve actually split around the ear bones and join back together on the other side.  He had only seen this once before and said he would maybe see it three times in his whole career.  It is extremely rare.  There is Noah on the other side of the statistics again.  His doctor went into great depth and drew many diagrams for us to understand exactly what he had seen and had to do.  He mentioned that if the surgery had been done by a doctor who wasn't very aware of the nerve split, it could have been very bad.  Immediately, I was thankful that Noah was placed in his hands.  I had always felt peace about this doctor.  (He wasn't Noah's usual ENT, his ENT actually referred us to him due to his expertise as a surgeon of these type issues.)  He also told us that only one bone in Noah's ear, the stapes, was abnormal.  And it was the bone prosthesis that gives him the best possibility of hearing again.  The other two bones, which could have been more complicated to restore hearing, were fine.  So he took Noah's stapes out, and replaced it with a prosthesis.  He rebuilt Noah's ear drum with some cartilage from his own ear and then completed the surgery.  There is another awesome element of this surgery as well.  He had planned to make an incision and basically lay Noah's ear open to do this procedure.  Even though Noah had the split nerve, he was able to see well enough with the endoscope to do the procedure without making the incision!  This is really awesome because that would have added to Noah's discomfort and recovery aspects.
Jason said to me, "now we know why this was the perfect timing."  Noah hasn't been able to hear since birth and we knew it was probably due to a congenital defect in the ear.  However, Noah's journey has been carefully played out one step at a time.  Yes we have ultimately made decisions about what is next, but I can tell you that God has led us to know when to take the next step.  I can't completely explain it, but somehow my heart has known even without knowing what is going on.  Sometimes you just can't fully explain it, it's the living spirit of Christ and I am forever eternally thankful for the love of God.  And sometimes even though we get scared, feel anxious, mad at the situation, and even feel like we have no idea how to hear from God, when all is said and done, it makes perfect sense.  I can say that I am not sure of why things happen in this life, but I can say I am sure God is with us every step of the way.  His love for us surpasses our understanding, but in my heart I have a constant reassurance He is always present.  He can handle our emotions, and we don't have to have it all figured out.  I know Jesus was with Noah, I just know it.  He was guiding the surgeon's hands just as many had prayed.  He was holding my hand and giving me peace in the middle of my worries.
And as for Noah, his only complaint was that the mask they put on him was covering his eyes and he couldn't see.  He woke up from surgery smiling.  The nurse said he was very mature for his age and was the best patient of the day.  We hear that a lot, amazement at the strength and understanding he has to be such a young boy.  I also can't explain the special spirit Noah has, but I can say that I am extremely thankful that God chose me to be his mother.  Noah's journey has broke my heart more than I  could express, but the pure joy and love I feel from being entrusted to care for him makes it all make sense.  He has been my greatest teacher in discovering how much God loves us.  I have a feeling Noah will teach many people the love of God over the course of His life.

"For you created my inmost being; you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well."

I have a feeling Noah definitely knows that full well, and I absolutely know he is fearfully and wonderfully made.

  

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