January 23, 2013

January 23, 2013

Today was rough. We spent the morning making sure Clayton drank his contrast for the CT, and premeding him for his MIBG injection, then we left for the hospital. We got to hang out in the playroom for a bit then headed down for what was suppose to be an easy CT. Clayton was already getting tired and hungry (he was NPO) before the scan , but what happened in the scan was just awful.
We went in like normal; the plan was as usual, I would hold him, they would give him the propofol through his line -just enough to make him fall asleep-, he would get a little upset like normal, then as soon as he closed his eyes and his body went limp I would lay him down on the table. Not this time. He gets anxiety as soon as he sees the machines and so he started whimpering, which slowly turned into thrashing in my arms. Meanwhile the anesthesiologist was trying to hook up his line and give him a dose of propofol. Almost as soon as she started, he went nuts and started grabbing at his port. This is where things got chaotic. I was trying to tell one anesthesiologist that he was trying to grab at his port, he was thrashing and screaming and the other anesthesiologist was slowly pushing more propofol in trying to find the dose that would put him to sleep. I think the one anesthesiologist just thought he was getting more upset from anxiety, meanwhile, I couldn't see why he was trying to grab at his port and I think the other anesthesiologist was trying to figure out what I meant by saying he was grabbing at his port. Was it just anxiety? Was it pain? Etc.
It was pain. The needle they used to access his port somehow came out enough to where the propofol infiltrated and formed almost like a big red blister under his skin. They said it was OK and shouldn't cause any harm though it might sting slightly while the tissue absorbs the propofol. It was all just traumatizing. Traumatizing for me and for Clayton. They had to be able to access him, so they had to take that line out, we had to hold down Clayton while the nurse got another needle to access him then the "blister" made it hard to find the port, so they had to manipulate it a bit...all the while Clayton was screaming and I am not only watching helplessly, but helping to hold him down as well. Again feeling like a traitor. One of the anesthesiologist was super sweet and started singing "The Wheels on The Bus". That seemed to help calm him for a minute here and there. The whole thing was just horrible though. Afterwards, I was shaking and weak because holding Clayton down is no easy task and it is upsetting to see him in pain and not be able to do anything; thankfully they did get him accessed again and so he was able to sleep peacefully.
Later in the afternoon, we had to do the MIBG injection which had me paranoid as well. I watched closely that the nurse had good blood return because I did not want radio active material infiltrating my child in a manner in which it was not intended. Thank goodness that in the middle of all of this Childlife was making pizzas in the playroom for parents and kids do while waiting on Clayton to recover after the CT, I was able to steal a quick bite of lunch. The neuroblastoma Childlife coordinator is really great and she is actually from Tennessee. Childlife programs are so awesome and a wonderful way for individuals or businesses to help out. On Tuesday we had an issue with Clayton's port as well and the line cracked and leaked all over him when we were trying to put him to sleep for his MRI. I didn't have a spare shirt for him, but since so many extra clothes have been donated to Childlife, we were able to run up and find him a shirt.
Clayton also has a problem with his behavior being appropriate given the situation. Kind of like the boy who cried wolf; and his not talking makes it all worse. It makes situations like the CT incident worse. It also makes me freak out like when we are trying to power walk the five blocks to the Ronald in temperatures that "feel" like 7 degrees only to have Clayton start screaming bloody murder (and especially given the day's events) causing me to frantically try and duck into a warm store to check him out only to find he was pissed off because his iPad was no longer connected to the hospital's wifi. Today sucked for some other reasons too and I will post about that over the weekend after we get home. That is a subject I want to save for when George and Clayton and I can all be together again.
Aside from that it was nice to see some of the families I care about, the Ronald and to go to MSKCC, but now it is time to come home! Praying tomorrow passes smoothly and test results will be good. There are some intervals that it seems many kids relapse, so those scans will keep me nervous; 3, 6, 9, 15 and 18 months seem to be popular relapse points. Obviously I am going to be quite nervous for a while.
Got my grouchy pants on waiting for tomorrow to pass...

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