So you know how the saying goes one step forward, two steps back? Well, not this time. No steps forward. Daniel was doing so great and we honestly thought we would be heading home today or tomorrow, when the doctors came in last night and told us that unfortunately Daniel’s CMV (cytomegalovirus) counts have gone the other direction. Instead of going down to 1,000 where we would like them to be for a confident release where he would go home on one IV med a day his counts went up three fold to over 360,000. Because of this we will know shift to a different virus medication that is unfortunately very hard on the kidneys. Plus to top it off he is having the terrible symptoms of the BK virus back again. The worst part of this one is excruciating pain with urination. We are talking off the charts. Nothing is worse than seeing your child scream in pain. We are trying to get his pain under control but now we are playing catch up and trying to get on top of it. A lot of it takes time to kick in. Just trying to get him comfortable is our goal. And JUST when he was feeling so good and getting back into great shape and spirits. He was starting to walk around the floor again and starting his homework and was having such a good time with all the doctors and nurses with this crazy “deflate-gate” thing. Now I honestly feel like we are back to square one…well not really. I know that is crazy thinking, we are so far from square one and I need to keep reminding myself of this, but at times like this it is hard to remember this. THis is all expected they keep telling us. It just stinks, they keep telling us. We just need to keep on top of this, they keep telling us. It can get away from us very quickly and can go very bad they keep telling us. CMV is very tough to treat. Heavy Sigh. So Rob brought some more toilet paper and tissue and a few more movies and will do another load of laundry and we will prevail. I guess more time will be spent sleeping than watching football this week (well maybe not, but possibly, nah, who am I kidding… football is is stronger than pain medicine, In fact, football talk is our best pain medicine and I think we should keep it that way. Onward and upward. I will hope for a peaceful night with few awakening for painful peeing and that we ease our way out of this pain and move a step forward instead of backwards and take baby steps out of here sooner than later.
3 Comments
Ilana Steinberg
1/21/2015 04:21:34 pm
Thinking of you all so much. Keeping you in my heart and prayers.
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Sandi Chamberlin
1/21/2015 06:45:52 pm
Well!! This sucks! Keeping you in my prayers.
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chandra
1/23/2015 11:07:41 am
It is really nice to see Daniel and Matthew so happy to together! Thining of you all!
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