I don't even know where to begin to write about the experience of the past 3 weeks. I've tried to keep dear ones informed on social media but it is really hard to do that because, firstly, there is so much going on, and secondly, because I don't feel that the whole of my world wants or perhaps needs to know every detail.
So I'll try to fill you in if you decided to click on my blog.
Over three weeks ago our son, Adam, was experiencing some severe itching and mentioned it to me one morning from his work. He went to get labs done and made an appointment with his local doctor. His liver numbers were high and he was noticeably jaundiced so his doctor called his liver doctor here in Kansas City. They set up an appointment for him to see his liver doc the following Monday which he did and had several tests done. They did a liver biopsy and the results showed that his liver was in good health but that he had a stricture (or narrowing) in one of his biliary ducts. So they scheduled a "noninvasive" procedure to stretch out the blockage on the following Friday. He went down and had the procedure done with Craig driving him.
On the way home that evening Adam was experiencing extreme pain and shortness of breath so they detoured to our local hospital ER. Testing there determined that he had severe pancreatitis which was something that was a possible side effect of the procedure on maybe 3% of the people who had it done. I know, we're just lucky like that.
While he could have gotten back in the car and ridden another almost 3 hours back to the hospital in KC they decided that the local hospital could treat him the same as they could. So from Friday night through Sunday morning Adam was treated with pain meds and fluids with no food or drink by mouth allowed.
Then Sunday morning right before the sermon started at church, Craig walked up to me in the front of the church where I sit for worship team and said "we have to go". Scared me to death. They had decided to take Adam to KC by ambulance back here to KU Med because his white count had shot up about 9000 points and they felt safer having him in a facility with liver docs on call. We followed after almost 2 hours of waiting for the go ahead from KU MED for us to come.
That was one of the worst nights of my son's life and for us as well as he was suffering greatly from pain. With doctors' orders not getting put into the system for almost 3 hours he writhed in pain suffering with no pain meds and wondering why no one was helping him. It was awful for him and so difficult for us. We had to leave to go home in a snowstorm and it was horrible wondering how he would get along through the night. Soon after we left he got some relief but it was the start of a long and difficult path for him.
The next couple days were up and down with the worst coming on Wednesday. Craig went back down to be with him while I tied up loose ends before coming down on Thursday. By Thursday evening he was in ICU and they were telling us that they were recommending that they intubate him because his mental state was so distressed because of toxins in his body and a raging infection in his blood making it difficult to keep him calm and settled to receive proper treatment.
Thursday night was our breaking point emotionally. Knowing they were going to intubate our child when he was already so confused and broken with pain and suffering was too much for both of us. Though they tried to assure us that they were doing it to protect his airway, allow him to be more easily sedated and give him some rest it felt so "end of life" and frightening.
The next several days were so hard but looking back I know it was the right thing to do. And thankfully, he doesn't really remember it very much.
Yesterday we began the start of week 3 in the hospital. As my dear Adam so brilliantly put it, that's more than a fortnight! He has been through so many tests, blood draws, intubation, feeding tube, and many other dignity destroying procedures that I won't share them all here. But he is my hero. He was already my hero for all that he went through as a young child. But now he has bravely put up with so much and is still fighting strongly.
His road to recovery will be pretty extended from the way it sounds and he's not home yet. I probably shared more than I should have but there were so many things that I didn't share here.
We want to thank everyone who is praying earnestly for him and for all of those who have sent messages or visited him and us in the hospital. We are also SO thankful for the 2 families who so lovingly cared for Anna all of this time so that we could focus on getting Adam well.
Keep praying for us all! We are so grateful for your prayers.