It's been ages since I did a proper update but thankfully this time no news is good news. Overall everything is going well, Ryan is really loving being home and the difference in his energy levels has been noticeable. It's going to be a very long time before Ryan has the energy levels of 'normal' children his age but the fact that he has wanted to use his new trampoline for 10 minutes most days and sometimes wants to go to the park for half hour once his friends leave school has been great to see.
For those that like the detail there is a lot to report but I will try and summarise what has been going on:
The week that we found out that we could come back to the UK we also found out that Ryan's liver enzymes had again become very elevated. This time it was felt it was a combination of toxicity of medication and a condition called siderosis of the liver or iron overload. Evidence of this was found in the biopsy done in April and together with a highly increased iron marker is now considered to be contributing to the inflammation of the liver. This has occurred because of the high number of blood transfusions that Ryan has needed over the past years now combined with his own strong blood count.
SO… it was decided to immediately stop the twice weekly IV infusion of anit-fungal, stop the immune suppressant, stop one prophylactic anti-biotic and half the anti-viral medication to a prophylactic dose. All quite a shock really but we are lucky to be in the position where these drugs can be stopped. At the time of leaving Tübingen Ryan no longer had HHV-6 or Adenovirus and autologous t-cells had reduced from 15% to 12%.
Ryan got a great welcome home from his local hospital and for the first hour, while we were updating his consultant, we didn't see him as he was off saying his Hello's to everyone. He is having his blood counts checked every week and unfortunately the Adenovirus has returned in his stool and HHV-6 has returned in his blood. His liver enzymes have started to reduce and his blood counts have been stable in the normal range. His cough has improved significantly too. We have also been able to reduce some of his electrolyte supplements as his kidney function is returning to normal.
All in all he is slowly getting better. Being home has been the best tonic, he really is so happy to be home.
Next week we are returning to Germany to discuss future treatment for Ryan (and to collect the boot full of belongings we had to leave at the parent's house!) All being well we will be home again within the week.
