Its super-late but...

I am so overdue for an update and our Gracie-bean could use a few prayers.

So, the stomach bug took a little longer to kick than anticipated, but she did wind up kicking it and things started getting back to normal. There was no need for a blood transfusion. We saw Dr. Joyce last Wednesday and he said that Gracie looked pretty good for the most part, but darnit the mystery tummy rash has returned! Total bummer. Dr. Joyce is again worried that we're dealing with GVHD and we are now back on what is called a "therapeutic dose" of CSA for the time being. While I am totally disappointed in this turn of events, it really is the safest and easiest option to determine if in fact it is GVHD that we're dealing with. I told our nurse that while Dr. Joyce may be right and I am on board with restarting CSA, I am not so sure that our mystery rash is what he thinks. So as an experiment, I have discontinued my constant application of the mystery-rash-killer-ointment aka triamcinolone (with Dr. Joyce and Nurse Paula's approval) to find out if CSA will handle the rash. Its been 5 days, and so far I am winning. The rash is still there (thank goodness its not itchy) deapite our CSA increase. The bad news is that this will probably mean that my poor peanut will need another skin biopsy to determine what the heck this crazy rash is. We'll just have to wait and see.

Fast forward to yesterday... Gracie spiked a fever and as per protocol, off we went to the ER for cultures and antibiotic. It was here that I can honestly say I began to miss our central line. They had to draw blood for the labs and unfortunately, Gracie has little baby veins and she was slightly dehydrated, so they were unable to get an IV. So they did a heel prick to get the blood sample and then we got our medicine as a shot. All in all, too many needles in the Peanut. She was not a happy camper. This morning she woke up and our fever was still hanging around, so we had to go back to the ER for another shot of antibiotics. :( Luckily thats all we had to do. So far, her cultures from yesterday have not grown anything, so there was no need for a second blood draw. We got home and Gracie took a long nap. She woke up and her fever was up again, but after some tylenol and a nice bath, she was cool and comfortable again. Here's hoping we wake up fever-free tomorrow.

So for all of our adoring fans, we ask for prayers against infection and prayers against GVHD. We would love to be able to begin our wean again. As long as we are on the "therapeutic dose" of CSA, Gracie must have regular blood draws to check the level of meds in her body. With no central line, this will not be a pleasant process for Gracie and I hate for her to be poked and prodded so frequently.

I hope I have better news for our next update.