I know that the title "update" is usually intended for hospital stays, but currently we are at home, and the "ish" in the title is because we are fighting very hard to stay that way!
I wish that my lack of posting over the last couple of weeks was because everything was normal and uneventful, but, sadly, it is because I have been up to my ears in never ending puke and poop (I bet that paints a lovely picture) from our little guy. Beck has never really gotten over the stomach bug that was discussed in my last post. And while he did have periods (no longer than a few days) of being free from bodily explosions, they always returned and returned with a vengeance! Yikes! I'll do my best to summarize the last couple of weeks, but be warned that there will be a lot of puke and poop talk (how lovely).
1. A week after Gwen, myself, and Beck were over the stomach bug, I noticed that Beck was still acting a little off (with spontaneous puke and poops) and that his right eye was swollen and red, so I took him into his pediatricians office just to make sure he was alright. There, he was diagnosed with a mild eye infection, labs came back normal, we were sent home, and that was that.
2. That night, Beck was going through diaper after diaper, which continued through the weekend (along with vomiting) and he had NO appetite, and by Monday, his HH nurse was called in to do more labs and check his weight. The results were: his weight was down again, and his labs showed that he was quite dehydrated, but they did not explain why he was pooping and puking up a storm. She also took a stool sample and that came back normal. After talking to the transplant team in Iowa City, we promised to push fluids, and see them in a few days.
3. Before going to Iowa City, we were told to come with our bags packed and to expect to stay (never a good sign). Once there, Beck had an ECHO, a slew of labs, and was seen by the doctor. Labs showed that he was still dehydrated, his Tacro level (Prograf - anti rejection drug) was smoking high, he was CMV negative (phew!), and that his B cells are still suppressed from the Rituxin from last year, but are slowly starting to come back. His ECHO showed that his heart looked great and had no signs of rejection (which the doctor was concerned might be causing Beckham's symptoms). Because of all of this, Beck's Tacro was lowered, he was taken off of Bactrum (which he has been on since March to prevent bacterial pneumonia, caused from the Rituxin), and we were sent home. Yeah!
4. By the weekend (that would be last weekend) his symptoms all returned with a whole lot more poop and puke, and he also developed a thick, mucous cough. On Tuesday, his HH nurse came to draw his Tacro level, a BMP, and CBC. His Tacro came back lowered, his BMP showed that he was much less dehydrated, and his CBC showed that his platelets had dropped to 97. Bummer! His WBC does not indicate an infection, so we still don't know what's brewing in this little guy. His EBV (Epstein barr - mono) test, however, came back slightly elevated - this does not mean that he has EBV, but we will watch it closely from now on.
5. Now we are playing the wait and see game. Labs will be checked again (Beck is a little pin cushion by this point) on Thursday, and if his platelets are still low then he will have to be admitted for IVIG treatments. I'm hoping that we make it at home until then. Beck is not sounding good with his cough, and the pukes are happening right and left. Actually, last night we were talking to Nate's family on the web cam, and Beck greeted them by vomiting all over. How sweet!
That's it for now. We'll keep you posted!
-Beckham & Co.