So just when you get a minute to relax and blog…yesterday I guess I prematurely blogged. Is that a thing? As Daniel was having a good afternoon sleep he woke up with a bit of a broken fever and as he was taking a nice long shower the clinic called with some test results from the day before. I could tell in her voice it was not good. She told me that they have been watching Daniels CMV levels for a couple weeks, as they do routinely on all BMT kids and it has been trending up but spiked through the roof on yesterdays tests. CMV is cytomegalovirus. We are all carriers of it and it is another one of those viruses, like the BK virus that we can all fight when we all have normal immune systems, but since Daniel has no immune system yet he can’t fight even a small or simple virus. I guess the level for treatment is anything over 1000 units and Daniel’s level was over 127,000 on Monday. This explains his feeling so awful we think. So as bad as we felt having to have him come back to the hospital the night before his birthday, it was a no brainer. CMV can potentially attack multiple organs and systems in the body but if caught early enough, which we have, before it is at that stage it can just be treated with IV antibiotics which we have now started. We could not start them last night because he was so severely dehydrated from not being able to eat or drink for the past several days or hold anything down. As Brandon, our favorite P.A. said, hopefully we will just be here for a 48 hour tune up. Please G-d. Daniel didn’t seem to have a problem coming in. He has been hard to read a lot lately, but he knows how bad he has been feeling and birthday or no birthday he just wants to get some sleep and feel better. I hope with all the fluids he is getting then a few doses of anitbiotics that that is exactly what will happen sooner than later and that maybe we can pull out a few birthday surprises for him. It has been very crazy at home and I have not been able to do a single thing to make this day more special than any other but he woke up this morning to a sign the night nurses had all put together for him which was nice and made him smile. That was a nice start. We will see what we can come up with. If anything, Daniel is more understanding than any other kid I know. Stay tuned!!!
2 Comments
Ilana Steinberg
1/7/2015 03:32:30 pm
Happy Birthday Daniel! I really hope you are feeling better soon, and can enjoy celebrating your day, even if it's a little late.
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AuntyMandy
1/7/2015 03:52:51 pm
Happy Birthday. Happy to be alive. Happy to have people care for you. Happy to get another Birthday.
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