Our rollercoaster ride continues...

hi everyone...mum here
Eli is still in hospital with lots of stories to tell! Im sorry its been a while, but clearly, there has been lots going on.
Dr Steve visited us on friday and said that he thought he could finally explain eli's high pulse rate from earlier in the week. Apparently one of eli's cultures had grown a staf infection, so they started some anti's. Yesterday, the weekend dr came and said that some more information had come through which indicated that eli may also have another bug called VRE - some bug that is resistant to the antibiotic he was taking for the staf...so they swapped it to another stronger antibiotic and until the microbiology stuff comes back, we are in lockdown again as the VRE is classified as a pretty full on infectious bug...
so everyone that comes and goes has to gown up and wear gloves again. Kinda like being in transplant again really...what goes in doesnt really come back out! (unless your mum and dad thank goodness!)...we also have to keep pretty much to ourselves as well.
The integrity of the hickmans (his noodles) will be questioned this coming week, especially if it keeps growing cooties. He is still taking stuff for his CMV infection as well - we havent had a negative with that as yet. We are guessing that it will be compromised a bit now that he has the other two bugs.
We had the kidney experts come up on friday to see what they can do about his high blood pressure. They said they would keep an eye on it over the next 48 hours (weekend of course!!). Im guessing that monday (tomorrow) will be another full on day with lots of information flying around no doubt.
We have had to move rooms again (4 times in 3 and a half weeks!), because of the infectious disease rules, we have to have our own bathroom. We are in a pretty funky room...a double one so we have finally got a bed!
We are so lucky that eli has remained pretty well and apart from being woken through the night for observations, he is pretty much sleeping through the night which is a huge relief. He is still very patchy through the day, but most of the staff know not to bother us unless they absolutely have to . Much different to transplant where he wasnt sleeping very well day and night!
Eli is still very much pretty happy within himself which is fantastic and is making our stay in hospital much easier. His eating has backed right off and he is into yogo's!
his outie has now become an innie again!
we wont fib, we are getting tired, but managing ok. We are still very unsure when we will get out. Finding it a big challenge to keep positive at times, especially when we continue getting told we have bugs on board. The main thing is to keep eli as well and as happy as we possibly can. I guess its just important to keep our eyes on the big prize...a cure for our jmml. The rest as hard as it is to swallow, is probably just peripheral at this point in time. We just need to know that his new mojo is doing the best it can..
anyways...keep all those wonderful messages coming....its times like this we look at everything and it really does keep us going...
I would like to send a huge cheerio to our pa who celebrates his 81st birthday today...we love you pa...
there are a few birthdays this month, so happy birthday to you all and we will think of you...
best fly...
hugs and luv
mum, dad and eli
xox