Liz Is In!!

So much blogging to catch up on, but will keep this short tonight. For those who are following Liz and praying, we had a breakthrough of sorts today.... Liz's original appointment with the Director of the Motility Center at Childrens Hospital Los Angeles was scheduled for a month from now. That is just way too far out especially now that her condition is worsening and the last-resort-drug is no longer an option. Liz's Pediatrician- my tiger, as I call her- called the CHLA doctor this morning and explained Liz's case and the urgency needed and.... we are in for Monday morning!!!
So exciting because we just want to get Liz's horrible impaction and motility issues figured out. She is so much worse than she is ever been that way. The films from Monday show that she is STILL just as impacted as she was a few weeks ago. Even after all of these cleanouts, she is impacted; something is not right and the GI team at Miller's is out of options at this point. Also, with the way her condition is progressing in that aspect, we know she'll end up back in the hospital. We were so torn on which hospital we'd take her to considering she isn't yet a patient of the CHLA motility doctor. Now though, we would know to take her to LA. I cannot express how grateful I am for Dr Lee and for her mighty roar- she just would not accept making Liz wait and end up with an admittance at our hospital where there are no other options. She so badly wants this under control so that Liz at least has a shot at starting school (of course there is the immunity issue to deal with too in regards to school). Our eleven year old cannot start school in a diaper and it is craziness to keep putting her through a whole clean ot (including enemas) each week. Something has got to give. So, Monday it is for CHLA and then Tuesday she has Hem/Onc here in Long Beach.
Monday's labs show that she is still pretty anemic and her platelets are the lowest they've been in a long time. No wonder she is pale and bruising with petechiae. We hope those counts will look better on Tuesday.
We just keep chugging along.....