It's been a long day today. We had some really great moments, and some not so great. First let me give you the good news.
Tomorrow we will be going home!! Noah has recovered so well that his doctors are letting us go home. He will begin therapy soon as we get home to get everything working back to normal. We met with speech, occupational and physical therapists today. Some things he hasn’t lost - like most of his speech and motor movement in his right arm. He will have to learn to walk again. It was a very hard thing for me to watch him not be able to stand on his own. But after everything he has been through I am glad that is one of the few problems we know of so far. I have heard some stories from some amazing parents these last few days. They have called us to encourage us and help us maintain hope. Their stories have inspired Jessica and I and have also made us realize just how blessed we are that Noah has recovered so quickly, He is still weak and swollen but he has got a lot of fight in him. I praise God for His mercy and goodness and that Noah is still here and has a future and a destiny!
This morning we laughed a lot, ate breakfast together, played with some toys and watched Elmo. The doctors came and examined him and told us to expect to leave sometime Wednesday. I was so thrilled. After they left I asked the nurse if we could speak to someone from the burn unit to help us know how to tend to Noah's arm. They arranged for one of the nurses and a burn doctor to come up. This is where our day turned sour.
I have received several emails about this blog where people have thanked me for my transparency. I have put off writing tonight because I really don’t want to be transparent but ... here goes anyway, I've got to vent!
All this time, nurses from the burn unit have been tending to Noah’s arm with bandages and a cream called silver sulfadiazine. It helps the burn heal and also soothes the skin so he won’t hurt as bad. We thought that this treatment was the only thing Noah would need in order for his wound to heal. When the doctor took a look at Noah's arm, she remarked that the burn was so bad; he would need a skin graft. She explained the burn had gone deeper than the hair follicle root and the skin would not grow back, they could wait for six weeks to see how it would heal on its own then try to sew it together, but she told us it more than likely wouldn’t work. A skin graft was the best solution. Man - this hit us hard. Noah has an appointment next Wednesday with her to evaluate and set up the day for the graft. This is another procedure where he will be pricked, cut and put to sleep for. He will have skin removed from his buttocks or thigh. I can’t tell you how upset this made me.
Talk is so cheap these days. If we are to check out and leave the hospital Wednesday, I wanted some assurances that what Dr. Young told us in the MRI would be honored - that the hospital would take care of everything concerning Noah's burn. All costs, prescriptions, travel reimbursement, and whatever else goes with it. The doctor told us she would get a representative from the hospital to come talk to us. It took a while and I had to ask our nurse to make a phone call to get them to our room. When they got there they told us the strangest thing.
They made the remark that they didn’t believe Noah's burn occurred in the MRI with the space cloth like we were told before by the scientist, but instead it may have happened in the recovery room after they laid a cotton towel on him. The towel had been in a warmer.
I couldn’t believe my ears. It was probably the stupidest thing I have ever heard. Jessica and I were very insulted. We may not be scientists or physics majors but we are intelligent enough to know how hot something has to be to burn to the third degree.
Before I go on I will say that this was no scientist or technician who reported this to us. So perhaps she left out a ton of information. And I mean a ton. And by no means am I saying these people are stupid or un-compassionate or un-empathetic. They have a job to do and are doing it their best. We just wish we could talk to the boss who gave them this information.
The last time I checked a cotton towel cannot burn to the third degree unless it is on fire itself. And if it was in fact a towel or heated blanket, why in the world would you heat one up so much that it could burn through every layer of skin??? And how is it that it only burned one part of his body - and how how how how did you figure we would believe such a thing??? We are wondering - "is there something they are trying to cover up? Why change the story?"
We felt a great sense of closure last Wednesday morning when Dr. Young sat us down and explained their findings. He said that the anesthesiologist had placed a blanket on him to keep him warm before going into the MRI room and it contained aluminum, The MRI staff did not remove it and they think it reacted with the machine and it arced and burned his arm, now they change the story? What’s the point? They say they tested the blanket and it doesn’t react to electric charge. I wish I could remember the name of the blanket. Perhaps some of you smart guys out there could help me out. (It has a blue cloth top and the bottom is shiny & reflective.)
I really wish they could recreate the scenario they are talking about because I really want to see this super heated blanket they say burned him. Remember - they did not say it was an electric blanket - they said it was a blanket that came out of a warmer - something to warm the blanket.
I grill a lot at home and I know how hot something must be to sear and burn. If the person who put it on Noah's body could not tell that it was too hot, then obviously it didn’t do it. If they did know it was too hot then they should be held liable and face criminal charges. If it were so hot, how could they even hold it? All of these questions raced through my mind.
If the hospital would give us a clear definitive answer to the cause of Noah's burn - that would be great. Something that makes sense and isn’t absurd.
If they could guarantee in writing that Noah will be taken care of in every area that would be great - we haven’t got anything like that yet - only the word of mouth and as you know these days - talk can be very cheap.
As you can tell I am upset. I have already taken two walks tonight and have held my tongue and my anger. Thankfully Jessica's Uncle John was here for a time and it really helped to have him in the room while I was talking to a hospital representative. Jessica said I did alright which means perhaps I didn’t say things out of my anger.
You know, we had such a good morning and were having such a good day until all of this. Now frustration comes to spoil the celebration that we have in Noah’s swift recovery.
As I took my long walk tonight I began hearing that "still small voice" of the Holy Spirit. "Cast your care upon me.... take my yoke upon you.... Don’t worry about your life...."
I realize all these frustrations are on my shoulders. I must give them over to God and let Him handle my family's situation. He can deal with them a lot better than I can. My thoughts tonight as I walked shifted to the Israelites on the boarder of the promise land. Twelve spies went in to check out the land. Ten came back saying the people were too great to be overtaken, two believed God and said "let’s go! The battle is the Lords!" (My paraphrase) The ten held their fears and frustrations on their shoulders and allowed them to dominate their actions and decisions. Joshua and Caleb, the two spies with a good report, believed God would fight for them and give them victory. I know that in my frustrations here I am in no way in a fight like Joshua and Caleb, but I am in a fight. I am fighting frustrations, doubt and fear. I fear that the hospital won’t honor their promise since we have nothing in writing, I am fighting doubt - holding on to hope for a good pathology report, and I am fighting frustrations with these answers that make no sense. It all adds up to a lot of stress to be honest.
God tells us to "Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. 7Cast all your anxiety on him because he cares for you. Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour" 1 Peter 5:6-8
Notice the devil prowls looking for an opportunity to devour us, steal our faith, our witness, our joy, our hope and our peace. But God has a mighty mighty hand that we are to stay under. We cannot handle the frustrations in this life on our own, the best thing to do is to stay under God's hand and let Him handle it for us. If we step too much in the way we mess it up. The ten spies did, they stepped in front of God and told the people false information.
When fear comes, most of it is false or bad information, when frustration comes, unless we give it to God we can’t see our situation like he sees it.
I must remind myself that this burn on Noah's arm did not happen by chance - God allowed it for a purpose. It's not my place to question and ask "Why God?" What I must ask is "What now??"
We are leaving Birmingham tomorrow after meeting some of the finest medical professionals in the world. God used their hands and this hospital to save the life of our son. We are so very thankful for those who work in the PICU, the surgeons, the nurses and staff. We are thankful for this hospital, we have seen some big miracles here.
Our biggest hurdle is next - the phone call that will ultimately change our life. The pathology report. We pray for a good report - God's will be done!
Please pray that in all these things God will work it out for good and be glorified. Pray that Jessica and I will represent Christ even when we are angry, "In your anger do not sin," Ephesians 4:26.
Please pray we will really get a closing answer on this burn mess.
But most of all pray for Noah - that he will be healed and God would get the glory for this! Pray that God would mold him to be a man after His own heart. Pray that God would use this do change the world for Christ!
God bless you!
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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.