Hemoglobin drop?

I've sat down numerous times to type out the happenings of the last couple of weeks but have put them off, hoping that I'd have more to share in one way or another. Well...hmm...this probably was not the best decision because, as we do have more to share, I now have to go back to the beginning and explain from there. Oh well right? I guess that's what you get for procrastinating.

Now, I hope that I did not alarm you with the above paragraph. Beck is doing relatively well and I don't have anything huge to report, but just wanted to update you on what has been going on with this little guy over the last couple of weeks.

(This picture really has nothing to do with the update, but I just thought it was great!)

First - Beck finished his steroids and is now officially off of them! Yeah! He did have withdrawal symptoms with plenty of puke, shakes, and mood swings, but it was much more mild than the last two times we tried to take him off of them, and this time was actually successful. Yeah again!
Now all we can do is hope and pray that his blood (meaning his hemoglobin and platelets) will be able to keep his antibodies dormant without the help of steroids, and not bounce back to his hemolytic anemia and ITP (the hope is that his lack of B cells (from the Rituxin) would be enough to fight of his antibodies).

Second - About a week after Beckham was finished with the steroids I noticed that his color looked 'off' and I called his home health nurse to see if we could run labs 'just in case.' She was thinking the same thing and came right over. It turned out that all of Beck's labs were normal except his hemoglobin, which had dropped slightly to 10.5 (which is still at the bottom end of the normal range). I, of course, had a mini freak out, and was scared to death that Beck might be relapsing into his Hemolytic Anemia (because of him being off of the steroids), but after talking to the transplant team I calmed down somewhat because they were thinking that the drop might be because of a GI virus.

Third - A few days later Beck woke up vomiting in the middle of the night and I became concerned when I could not control the puke with Zofran (I was scared to death that it was from his hemoglobin lowering even more because puking is a symptom). After talking to Nate about this, he came home from work so that I could take Beck to the hospital (which is really ironic because he had to come home from the ER he works at so that I could take him to a different ER). Once at the ER, I explained Beck's history and symptoms to Doctor "super grumpy because she has to work the night shift," or maybe her name was Doctor "I am a pediatrician who SUCKS with kids." She was no help and instead of listening to my concerns about my child she became angry with me for bringing my child into the ER for puking, and then she accused me of not having Beck watched closely by other doctors. You only can imagine how angry this made me (seriously, I bet there was smoke coming out of my ears) because, HELLO, does she really think that A - I do not follow up with a HUGE amount of doctors almost daily? B - That I would bring my severely immuno suppressed child to a dirty ER at 3:00 AM for fun? and C - Does she seriously think that I would not have the right to assume that something is not right with a child who gets the some of the strangest illnesses? Sheesh!

Anyway, before I get myself worked up all over again (I know, this is very un-Kim-like behavior) I'll just give you the gist of the ER visit. It turned out that Beck's hemoglobin was still slightly low, but his WBC (white blood count) had risen sky high, indicating an infection. When I asked Doctor "happy pants" about his WBC count, her reply was that it was probably from his steroids. When she said that she now became Doctor "I went to medical school and obviously learned nothing" as well, because it was NOT his steroids that caused that. He had been off of them for almost 2 weeks at that point, plus his WBC had been at 5 only 2 days before. Sheesh again!

Fourth - After leaving the ER, Beckham, had a long day where he went through diaper after diaper after diaper (nasty). This meant that the transplant team was right on the money and that it was a GI bug, and that Doctor....I'll let you fill in the quotation marks...was wrong.

Fifth - Beck has now been over the symptoms of the GI bug for over a week, but his hemoglobin has still refused to rise. He is also still quite pale and down a few more pounds. Because of this, he will have to have frequent blood draws, and will have to be monitored a little closer to make sure that there is not something else at work with him. He actually just had a blood draw and it wore him out so much that he immediately sat on the couch and ended up like this:



Sixth - We are still at home! We are still doing great! And that's they best part of all!

-Beckham & Co.