Hi everybody! I'm sorry I've taken so long to update, but really there wasn't much to say. Thankfully (knock on wood), Shade has not had an attack of pancreatitis since the end of May! If he can keep this up a little longer, it will be the longest he has gone without an attack since this whole thing began! We are always worried that it could happen at any time, but we try not to let it ruin the fun of life.
When I last updated, we were still dealing with issues with finding out if Shade's port was being flushed properly and if it could safely be accessed by a 1 1/2 inch needle. Well, Dr. Wiesenauer called us back again and told us that he spoke with the nurse at Flaget who had been doing the monthly flushes of Shade's port and he was confident that she was doing them correctly. He also called the vascular access team at Cincinnati Children's and spoke with them about it all. They had no knowledge of the incident during Shade's ERCP where the team could not access his port. There was nothing in his chart to indicate there had ever been a problem, and they assured Dr. W that they would be fine using the port in the future even if it was deep. At our request, Shade's next port flush was scheduled at Kosair Children's Hospital. We felt like this would give us an answer once and for all. Also, they use a numbing medicine on the skin before inserting the needle, so we really wanted to start having it done there. I'm happy to report that all went well at that appointment and his port was successfully flushed with a 1 1/2 inch needle. They said it was very deep, but they didn't think it was unsafe and they saw no reason why it could not be used when needed. His next flush will also be at Kosair on Dec. 22. It isn't a fun experience, but the next time he is admitted to the hospital, we will know it was worth it.
Shade had an MRCP (a kind of MRI) yesterday (Dec. 11) at Cincinnati Children's. He's had this done a couple of times before, but always right after or during an attack of pancreatitis. They wanted to see results when he was feeling fine for a while. When the person in scheduling called us to set up the appointment, she said that it would be without sedation. I told her that he'd never had one without sedation and that I couldn't guarantee that he would be able to stay still and complete it. She said she would make a note in his chart. I had a bad feeling about this, but if they wouldn't listen, I wasn't going to argue about it. When we arrived yesterday, several of the staff questioned why he wasn't being sedated and all I could tell them was that it was scheduled that way despite my suggestions. They seemed a little annoyed at the person who did the scheduling and I was too. Shade was really happy that he didn't have to have an IV and he liked that he could watch a movie on the special goggles that he was going to wear. I was allowed in the room with him. They strapped him to the table and put something over him that was like a turtle shell. They put headphones on him and goggles. He handled all of that very, very well. They could speak to him through the headphones, and he could hear his movie through them too. We told him beforehand that the machine would be loud but that he could have his movie loud too and that the machine would not hurt him. He seemed ok with it, but I knew there was a 50/50 chance it would work out. They gave me earplugs and they left the room. Shade did fine with the bed moving in and out of the machine and the goggles and headphones and responding to their questions. Then the machine started to make loud noises and Shade got upset. He yelled for them to stop and turn his movie up louder. This seemed to work for a few minutes but then he was screaming for them to "Help! Get me out of here!". They stopped it and unstrapped him and he was crying. Poor baby. :( I told him that he did a great job and that it was over. He was scared because of how loud it was. The staff informed me that we would not be charged for the few images they were able to get and that we would need to reschedule another MRCP with sedation. They couldn't sedate him that day because he had eaten. The next one is scheduled for February. All in all, it was a waste of time and gas, but now I know to always make sure they sedate him for anything like this. I thought being still would be the issue, but sudden loud noises scare him too, like hand dryers in public restrooms. I should have insisted on sedation from the start, but when a professional acts like they know better, it's hard to hold your ground sometimes.
No comments:
Post a Comment