Anyway all of you must be wondering how today went. Well today went good. We had an early start in theatre bright and early. They gave Jason a pre-med before he was even wheeled down to theatre so he was nice and relaxed before going in and not so frightened. I went in with the lovely scrubs, gown, head gear and socks. Jason well he went with his trusted friend Woodie. The sedation went really well. We had a fantastic anaesthetist who was so good with Jason. He handed Jason the sedation mask and showed him how to “put Woodie to sleep” so Jason had to put Woodie to sleep. Then the anaesthetist said put Jason to sleep and his reply was “uuuaaaahh” so Woodie had to be put to sleep again and only then did he allow the mask near his face. He
did really well with no crying or screaming and went off peacefully.
Jason was in theatre for about 40 minutes. Before we knew it the anaesthetist was out and it was time for Jason to go downstairs to x-ray. I spoke to the Urologist to get the run-down of the procedure while Bruce went down to x-ray. When I got down to x-ray Jason had already woken up and was screaming the house down. He had woken up on the x-ray table and obviously got a huge fright being there with 3 people holding him down, a catheter in and of course those scary machines. Shame this was very traumatic for him and he was shouting, kicking and screaming. For such a small guy he really has power in him. He was like this for about an hour and a half. Very traumatic for all of us.
So the procedure, what they found out was that the problem was that the hole in J’s penis where he urinates out of was smaller than a pin prick. So what’s been happening is his bladder has been filling and the urine couldn’t get out easily so the bladder has been filling up and this has been putting pressure on the bladder and the kidneys. There is a possibility that the urine was refluxing into the kidney as it had nowhere to go. The urologist dilated the hole and placed a catheter in and the catheter will stay in the weekend.
We have also decided to change feeds and go with Neocate. Unfortunately Neocate is R400 for a small tin but money is something we cannot worry about. Jason’s health comes first and if Neocate is the right formula for him we will find the money somewhere. I may have to make further plans for fundraising (all assistance welcome!). We will need 3 or 4 tins a week. So will cost us minimum of R4,800 a month just for formula. BUT as I said if this is what he needs and he can stop pooing so much, grow and thrive we will make a plan. We started the Neocate today and So far so good no pooing today besides the one in theatre – the anaesthetist actually asked me what feed Jason was on because the amount of diarrhea he had was crazy. This was on Isomil (Soya).
I am sitting here smiling and listening to Jason talk. I haven’t heard him talk this much in days. His fever is 37.7 at the moment so they are giving him something for that. Hopefully we don’t have high fevers tonight!!
Is this the answer to all Jason’s problems, I have no idea. Lots of people are asking that question but we will only know in time. The temps, nausea and vomiting could be symptoms of this problem he had but we don’t know for sure. I really hope so.
I also met with a professor that Dr. P called in for another set of eyes. He is a specialist paediatrician that specializes in kidneys but has a huge knowledge and lots of contacts. Dr. P also wanted his opinion on the ultrasound and Jason's kidneys and will discuss Jason with him. We ran through Jason’s history briefly and he has asked me to email him as much info on Jason and he will get in contact with a gastroenterologist the he associates with in America. This will give us an opinion into his gut and gastro problems. He will also look further at Jason’s history and mull that over. He asked if going to America would be an option for us. Well that would have to depend on fund-raising again.
We are getting very tired of this hospital room and hope home time is nearing in the next few days. I have been living off hospital food and woollies meals (thanks Tam and Janine) and being spoilt by friends popping in with cakes and snacks and chocolates. Bruce and Nicole they have been living off granny’s home cooked frozen meals at the moment. I am looking forward to my own food and a good old chicken weber when we get home. Maybe also need a good strong double spiced gold and coke too ha ha ha. Actually that would be LOVELY tonight after such a long hard day.
Thank you for all the Facebook messages and Whatsapp messages. I appreciated every one of them. We are really blessed to have all of you care so much.
I am very tired tonight. I probably haven’t said half the things I should have said but tomorrow is another day and we will take things one day at a time. I don’t know all the answers but we will see what tomorrow brings. It’s just nice to hear Jason talking and playing on his iPad
This is me over and out.