It's Been A While....

Sorry for the lapse...Henry and I have been putting it off. Here's the short version: We took Zoe home from Harbor View on July 4th thinking yeah! Independence Day. We got semi settled at home with a visiting nurse and at home IV infusions of antibiotics. Two days later Zoe spiked a high fever and was vomiting, and we've been at Emanuel Children's ever since. She is doing better today, but we are NOT in any hurry to go home. She had the docs a bit stumped because she had all the signs of a major infection brewing (aside from the ones she already has), but the docs couldn't figure out where it was coming from. In the meantime, she had a new long term line placed, has been getting potassium, phosphorus, and amino acids in her feeds, physical therapy, occupational therapy, art therapy, and a group of docs that have been watching her like hawks. It's quite nice to have her oncologist overseeing things for us now, because in Seattle it was just a bit of a free for all with no real system of communication on any level. Her spirits have improved and she is getting a lot more active! There are a few concerns, but the big picture is looking a lot better...I'm praying that it stays that way. She is still on the tube feeds for another couple of weeks until her ENT says her pharynx is all healed. Zoe has been very tolerant of this...she really understands how important it is for it to heal completely and that it takes kind of a long time. She is being weaned off of the steroid and pain med which we are thrilled about! The less drugs the better. The infection in her neck appears to be under control, but only time and repeat scans will tell. She has cleared the C. Difficile infection in her gut, and has been taken off isolation so she can leave her room!!!! Very exciting for us after being trapped for a month wearing robes and gloves! Her gut is still healing, the colitis did a number on it, and she has been losing protein through her intestinal walls which cause her albumen levels to drop, this will heal in time.

Henry and I both proceeded to get sick these last few days...it all just caught up with us. We're doing ok, and thank goodness nana came to visit for a few days on her way back from Hawaii to Colorado. She has screwed my head on a little straighter for me, and given us a break. I will be so sad to see her leave, because I have no idea when we'll see her again. So, it's all about healing and getting stronger right now, and then it looks like we'll be going to Houston, TX for a couple of months of radiation. Loma Linda isn't going to be the right place after all it appears.

Try to keep you updated.
Colleen