Well, I've been avoiding updating the blog. I've been in a very negative mood and didn't want to share that. It seems every time we take a step forward, we take two steps backwards. We just can't get ahead. Ugh.

We were excited to get the Malecott drain out last Tuesday. It had not drained much, and we were hoping beyond hope that that was a good sign that the hole in the intestine left by the Malecott had sealed up like it was supposed to. Well, no such luck. I will refrain from swearing. :(

On Friday I noticed that the midline incision scar was looking different. On Sunday morning, a lovely fistula popped through. Not good. On Monday, we called the surgeon, but he is out of the country......have you heard that one before? This time he is in Nigeria. We had to go out to the G.I. doc for Cimzia shots, and he was not too happy either. He ordered blood work, which was off the charts, not good, and then called the surgeon's office to talk to one of the partners. He was less than helpful. Nobody wants to deal with Brent because his case is so complicated. We ended up at UVRMC for a CT/fistulagram. It showed that the fistula goes right to where the malecott came out of the intestine. Ugh. The good news was that there was not an abscess detected.

sooo, now what??? Good question. He is on two different IV antibiotics. He is draining out of three spots now......the fistula, the hole where the drain was, and the small hole we still had in the midline. It's not fun. We are not sure what to do. I'm not sure we can wait until next week when Dr. Price comes back. The only way to get rid of a fistula is for it to close up on its own, or to surgically go in and repair/remove. We all know how well Brent heals, so we are not too optimistic that it will heal on its own.

We are more than a little discouraged. We hope and pray and hope and pray and keep going backwards. It's crazy. We are tired and frustrated. It would be awesome to get some semblance of normalcy back in our home/lives , but as our sign says, "Normal around here is just a setting on the dryer."