Update 4/20/09

I'd intended to do a post last night and tell you all about our weekend, but after finally getting Beckham to sleep, the option of sleep for myself looked way too inviting. But after tucking myself in bed and falling fast asleep for an hour, I kissed what was left of my night goodbye as Beckham had another agenda for us. Who needs sleep anyway? I guess I don't, because the boss (aka Mr. Beckham) obviously calls the shots in this place.

Beckham had a very quiet weekend filled with plenty of walks around the PICU, numerous visits to the fish tank so that he could say "shh" (shh is his word for fish), and a small rise in his platelets (Beckham actually hit the all time low in finally achieving zero platelets, and as of this morning they had were at 3). He was also able to make many new friends and capture the hearts of much of the staff as he made himself right at home wherever he went.

Plasmapheresis was started again yesterday and will continue through Thursday. Beckham seemed to respond well to the treatment yesterday, but as he woke up from the sedation he was completely inconsolable and writhing in pain. After Tylenol and a dirty diaper, Beckham, perked up and played the rest of the day until he fell asleep. He woke soon after (this is where we get to the point of my first paragraph) and was again writhing in pain - very strange for Beckham because he is a baby that has always been easy to console - and immediately threw up. I was able to get him to sleep after a half hour, but he woke up again in pain again. The doctor came in at this time and examined him and and was quite concerned with his behavior (shaking, pulling his legs to his chest, red skin, pulling at his lines). He was again given Tylenol and a glycerin suppository (sounds fun right?) and after about an hour he calmed down (with the help of an Elmo DVD, because who doesn't love to watch Elmo at 3:00 AM?). We're still not sure what is causing his pain, and if it happens again then we will need to take a closer look. His Nephrologist (he is the one in charge of the Plasmapheresis) seemed quite concerned with his pain and will discuss it with his team today. A thought is that it could be his magnesium levels that have decided to take a dive during these procedures. He is being given oral and IV magnesium to replace the loss.

I had a discussion yesterday with his Nephrologist about his thoughts on how successful or unsuccessful this treatment has been. He said that he could not give me a for sure answer on this because Beckham is basically a trial case and we are in the wait and see stage. He did however seem hopeful and made sure to let me know that he and the transplant team are not giving up, but are exploring every option. This means, Rituxin will be given again after his Thursday treatment (Typically, Rituxin should last in his body for a month, but the Plasmapheresis pulled out the dose that was given to him last week) and there is also talk of starting him back on Cellcept (an immuno suppressent that he took until August) to help with the ITP. I am not sure it that will actually happen, but I know that his Nephrologist would like this.

I wish that I had more positive news, but this is where we are for the time being. Continue to pray for our little guy. We have been so touched as we have learned of all of those out there that are praying, pulling and thinking of Beckham. Thank you is not enough, but it will have to do right now until I can find away to hug each of you.