Friday, 17 May 2013

Hoping For A More Comfortable Weekend . .

It's been a few days since I've last updated so thought I best had. Pain has got worse which led to only 2 hours sleep Wednesday night. My days have consisted of laying down, little spells of playing and naps in the day. Wednesday my meds were changed a bit, some stopped, some increased and one introduced. The one introduced was to help with sleep. It didn't work. The pain just seemed to get the better of me which resulted in a very restless and uncomfortable night. Last night was a bit better because the pain nurse started me on an NCA. It's a continuous infusion of pain relief with a boost button to use when the pain got worse. I am only using the NCA for the boost though because they have decided to keep the fentanyl patches on as my continuous pain relief and have a button for a boost of fentanyl. I have needed this a few times and it worked for me because it helped me to get comfortable again and manage sleep. Carly is getting the doctors to change my sleep meds back to the ones I used to have as the new one isn't doing anything. 
The Gastro consultant came to talk to us yesterday, it seems my gall bladder is what is causing all the problems. In the meeting on Monday it was decided that my gall bladder needs to come out. It is abnormal, not working properly and full of sludge. It was thought that back in December when I got poorly it was my gall bladder but they thought it was infection so treated me for that, now because I am showing symptoms and in pain, its more than infection. I was getting temperatures yesterday so rather than wait, the consultant jumped straight in and started me on antibiotics. The worry is, if my gall bladder isn't working properly and could be inflamed, it could have infection which then could track elsewhere around my body. My line is precious and we are protecting it because as I've said before, 1 more line infection then its off to Birmingham Children's Hospital I go for a small Bowel and Liver Transplant Assessment. This could be what happens in the future anyway but for now we aren't ready for that chapter yet. 
My surgeon hasn't been around this week, he didn't attend the meeting on Monday but sent another surgeon on his behalf. That surgeon hasn't come to talk to us of the outcome but we have been told by the Gastro team what was discussed. The surgeon that attended wants my surgeon to come and discuss things with us, he should be coming to see us on Monday. I was booked in to go to theatre on Thursday for the Endoscopy, Colonoscopy and Biopsies. That has been put on hold for now. The reason behind that is because its felt my Gall Bladder is the cause of the pain so its more important to get that sorted. Hopefully Monday we will find out when this will happen. If I recover ok from having my Gall Bladder out then they will plan for the Endoscopy then but if the pain has subsided it may not be necessary to do it. I am a high risk for Anaesthetic and they don't like to do it unless it absolutely necessary because of how complex I am. Doctors are scared to do things with me too which causes a problem over weekend if I become unwell. They don't like to make decisions because most don't understand my conditions and it confuses them. 
Hopefully weekend will be a bit better than what the week has been now that I have the NCA. I'm not able to get out and about now but as long as I'm comfortable I don't mind. 

My ever expanding machinery that I'm connected to..  

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