Thursday, July 24, 2014
Hospitalization 2014 - Part 1
So Caleb is on stint number two in the hospital this summer, well, technically I should say since July 2nd.
The first one came because he was running a fever of 102, his doctor ran labs, like we had been advised to do thre years ago (at least - more about that later) and learned that his neutrophils (the bacteria fighting cells that your bone marrow produces) was at ZERO! As soon as his pediatrician called and said she wanted to admit him I started rushing around packing up, getting someone lined up to watch Steven, and getting up to the hospital.
When we arrived at the hospital, Caleb was not happy that we were going to be staying. He hates the hospital! I knew we would have a battle with the ID bracelet, so I had intended to speak with the registrar about just letting me carry it upstairs and then sneaking it on him while he slept. However, God was faithful and merciful in the situation. He provided a HUGE blessing to me by a registrar named Vicki.
They wanted Caleb to wear a mask due to him having no neutrophils. I told them politely that he would not wear it. I was advised that it was for his protection. I told them I understood that, but due to his Autism, there was no way that he was going to wear it and I had bigger battles that needed to be fought rather than trying to fight him over wearing a mask, namely getting upstairs. This is where Vicki comes in.
I think she actualy remembered us from some of the times when we had the major problems with the ID bracelet in the past. (Now, I can add to my "You must be a special needs parent when you are recognized by sight by" list, because it is pretty sad when the registrars at the hospital remember you.) Vicki asked me if Caleb liked basketbll. I told her that he liked bowling. In fact, he was playing bowling on the iPad while all of his was going on. She told me that se would draw some bowling pins and a bowling ball on his ID bracelet and that maybe he would put it on if she did that. When they finally had his room upstairs, Vicki showed Caleb that she had drew two bowling pins and a bowling ball for him and asked if he would wear the bracelet. Much to my surprise he said, "Yeah." Vicki was my angel in disquise! I made sure that her supervisor was notified of her "outside of the box" thinking to help Caleb. She had told me that she had a grandson with Autism, so she completely understood that sometimes you had to think "outside of the box."
Those first few days were very scary. There were a lot of testing going on and they were testing for some very serious things. We had no idea what was going on, but everything came back negative. There had been talk about doing a bone marrow biopsy, but because his bone marrow responded to the neurpogen shots that they gave him to jump start his bone marrow to make the neutrophils, that was put on hold.
It was a very long holiday weekend because not a lot was done and there was still a lot of vomitting and not eating. We even tried bringing in his favorite foods - Chinese food and Chipotlee - and who knew tht Chipotle closed on the 4th of July - not this momma! And he wouldn't eat those. Those are things that he cannot get enough of while we are at home.
Since this has gotten pretty lengthy, I'm going to write more later and get this posted.