Update 5/24/09

As I am rubbing my eyes trying to keep myself awake, while listening to the Wiggles, while Beck refuses to go to bed (quite shocking as he has spent the last week sleeping most of the time.), I was reminded that I should probably do a quick update to let everyone know how our weekend has been.

Beckham's hemoglobin decided to drop down to 5.4 on Saturday (after his exciting 7.4 level on Friday). I talked to the doctors about this, asking if this was a bad sign, and was told that they actually think that the 7.4 level from Friday was probably inaccurate and that it is more realistic for him to be at 5. His level was at 5.8 today - a small climb, but we will take what we can get. A transfusion is still not planned, as the doctors want to continue to see if his body can replace his destroyed hemoglobin by itself. His platelet levels were also unavailable again on Saturday - even after the "special" way of collecting and running them off to the lab - due to the fact that the lab only runs this "special" test on weekdays. Lame. It was alright because for some reason his platelets were available today and the magic number was 29. Woo Hoo! Can you believe it?

Beckham still remain extremely tired, but making small improvements everyday. He actually walked around the room and out the door to a wagon today (the most he has walked in almost a week). He is also eating much better, throwing up only once a day, but preferring to only drink Pediasure most of the time. I did offer him some pizza yesterday which he gladly excepted, but screamed after almost every bite. I was a little concerned about this behavior, and when it happened again today, I took a look in his mouth a found many large white sores covering his tongue. Both the resident and his cardiologist looked at his tongue and were a little baffled if it was either thrush or something else. Either way, he was started on Nystatin tonight (which he surprising loves). Beck also finished his last dose of IVIG tonight and his steroids have started to be tapered down. Hopefully this will help with his "captain angry" behavior. It is so hard taking him for walks now because people stop to tell me how cute my baby is, only to have Beckham scream and scowl in their face in response (so sweet). I apoligize in advance if he has the same reaction to anyone else.

Thank you so much for the continued support for Beckham and the rest of our family. Thank you also to our Ward in Des Moines for the special fast that they held for Beck. We truly felt the strength from each of you.

Time for bed!
-Kim