Firstly I am sorry about the lack of updates. The time is flying so fast that I just don't know where it is all going.
We were in the hospital from the 5th - 22nd of September because one of the blood tests came back positive for the CMV virus so they needed to administer Gancyclovir twice a day. Doc Tiedemann decided that since he was becoming too tired coming in to the hospital once a day it was a bit much to ask him to do it twice a day.
He did not like the hospital food and since he basically stopped eating he went downhill. He developed diarrhea (which he still has a month later!) and he lost some weight. In the end Jake asked the doctor if he could go home and she agreed with us coming in in the morning and the HACC (home and community care) nurse coming out to us in the evening. Luckily this only lasted for one week, at which point the CMV culture came back negative, so he only needed the Gancyclovir once a day. This meant that the HACC nurse came to us every evening and we only needed to go to the hospital twice a week. Jake was happy with that.
While at home Jake developed abdominal pain which began to increase in frequency and intensity. On Tuesday the 29th of September I asked the Doc for stronger pain relief as the Panadol was not enough to stop Jake from waking up writhing and clutching at his stomach. A week later, on the 6th of October, while I was talking to our nursing co-ordinator I said that I had had enough. We needed to find out what was happening now that even the Codeine was not having any effect.
His blood pressure has gone up now so he is taking two different tablets to lower it.
I asked for him to be admitted to the hospital so we were there from the 6th to the 13th of October to find out what was going on. They performed a biopsy of his stomach and bowel. Jakes pain was becoming so significant while we were in that they actually changed his painkiller to a morphine derivative, which helped, so Jake was able to sleep a full night for the first time in a month. He was very relieved. Once again he drastically reduced the amount of food he was eating as his stomach got more and more sensitive, so the dietitian placed him on a dairy-free diet. The dietitian told me that Jake was not the only child admitted with mysterious abdominal pain currently on the ward so they were scrambling to find out why there were so many.
The dairy-free diet has helped to reduce the amount of diahreah and his pain is back to manageable with Codeine. He is going to have an ultrasound of his pelvis and renal tract to see if there is anything there that could be causing the pain.
Todays meeting with the Doc was all good news:
The Prednisolone reduction is very significant because it's keeping Jakes immune function from working to its full potential (to prevent the transplanted cells from rejecting him). Once this steroid is stopped Jakes body will fight the HHV6 on its own, at which point we will be able to stop the Gancyclovir and all the other antifungal and antiviral drugs which he is currently taking. He HATES the nasal spray - but then I would too!
This also means that once his immune system is working on its own he will be able to start expanding his social circle! And he can get off the clean diet, though I think we might stick with the dairy-free diet.
So we are just waiting for the one drug really :)
Thank you all and sorry again.
Bibi