Back In Seattle...

Our homecoming was unfortunately not what we hoped it would be for Zoe. We got home last Thursday, and by Saturday we had Zoe at Emanuel Children's Hospital in Portland with what we thought were complications surrounding the C Dif. infection. Zoe's poor little belly was immensely distended, and her oncologist feared that she might be headed for toxic mega colon which is extremely dangerous. She was retaining fluids in her abdomen as well as other areas, and there was swelling in her colon. She immediately became NPO (which means she couldn't take any food or drink). Since Zoe was put on the dex steroid her body tells her that it's hungry night and day and is essentially insatiable. She proceeded to literally scream for the next two days from hunger, and on Monday morning we sat her up to take her to the potty and found a stream of discharge going down her back from her first op site. To make a long story short Zoe and I ended up being life flighted back to Harborview in Seattle, and she was in surgery the next morning for a an infection in her op sites. Dr. Sekhar went into her original op site and flushed out all of the infection, Dr. Mirza removed a lose piece of her bone graft that was infected, and the ENT Dr. Moe repaired her pharynx. Turns out there was a "communication" between the injury to her pharynx and her neck down to her collar bone. What this means is that when they did the first surgery they removed some tumor from her pharynx and stitched it up, but it apparently never healed completely so when she began to take food and drink again this caused an infection which then spread to the inside of her neck. The infection is quite complicated and she may require more surgery to clean out the infection again, and the ENT doc may need to do more repair on the pharynx by pulling some muscle from her neck to help close the hole. This tissue separating the inside of Zoe's throat and the inside of her neck is quite thin and delicate so this makes it tricky. Zoe will not be able to eat or drink for at least a couple of weeks until her pharynx is completely healed. She has a feeding tube again which I know she won't be too happy about, but the docs here think we're getting a handle on the C Dif. so she is able to have her feedings. Zoe will be on IV antibiotics for three months to make sure that this infection is completely eliminated. We don't know how long we'll be in Seattle this time around, but after this experience I'm really in no hurry to get her out of here. I want to be sure this time that all is well. That was a very terrifying experience for all of us, and especially traumatizing for Zoe. There was really no way of knowing that this was brewing, her CT scan right before we left for home didn't show a thing. It must have been silently brewing for some time, and then for whatever reason blew up into a full blown infection. All the docs here have been wonderful...so very concerned and sensitive to all of our needs. Dr. Sekhar, and the other surgeons that operated on Zoe yesterday made themselves instantly available for her (which is no small task), and I am so grateful to them. Today I feel reassured that all will be OK....there were a few days there that we didn't know what was going on inside her tired little body, and my mind inevitably went to the scariest places. It's so true that the devil you know is better than the devil you don't know.

Right now Zoe is resting. Her white cell count has gone down (that's good), she is getting nourishment through her feeding tube, no fever, and the docs feel good about how she's doing....which means I feel good. Now it's the wait and see game. Henry and I are doing our best to take care of ourselves. We're trying to get a place to stay lined up again, but running into some trouble because DHS is not returning our many phone calls. It looks like we may be living at the hospital after tonight, but we're remaining hopeful that they will come through at the last minute.

Zoe's awake and it's time for me to read some more Harry Potter....gotta go.
Love and miss you all.

Colleen