Cincinnati Update

Hi everyone - I snuck up before everyone else on this snowy Sunday morning because it's been busy around here! We are home from Cincinnati for the weekend, and then next week Addison and I will head back down again for some follow-up and new appointments.

Addison did flawlessly under anesthesia. I was really worried because we never learned the cause of her last regression and we never will, but I do know that the night before she said "Night-Night!" at bedtime and was my 'typical' Addison, and after that procedure the next day, she lost all understand and speech and has never gotten it back. I explained all of this to the head of anesthesiology who was fantastic, he told me he would stay with her in the OR the entire time himself and watch her vitals for any sign that something was off. Instead of giving her full general sedation, they used gas ton put her to sleep and gave her a narcotic pain med to keep her from feeling anything. She did need a breathing tube at one point, but he said everything went great and her blood pressure, heartrate etc. never faltered during the entire thing. She woke up much faster than she has from the sedation we've used in the past. She ate right away, and within an hour or two, she was back to her normal self. So that part of everything was fantastic.

Dr. Levitt, the Colorectal surgeon was fantastic. He remembered how much we had been through and as soon as he walked in, he said "Oh so THIS is the little girl I called all over Michigan trying to see!" I really cant say enough about his caring and awesome personality. We expressed our frustration at having to have gone through 7 other hospitals with no answers and he said, "You know in Soccer, how there's the goalie? Im the goalie. It's my job not to let anything get by me....we will get her taken care of."

I really loved everythign about the hospital, the first thing I noticed is how everything seems engineered to make life easier for the patients and their families. The parking, to the registration systems, to the crazy busy OR, to the Xray area..... every single thing we encountered was simple and easy and well-planned. It made me wish we lived closer to see them for ALL our specialties. Everyone was so kind, the nurses were all great, everyone seemed to really enjoy their job.

After her biopsy was done in the OR, he came and talked to us and told us the game plan was actually going to be changed. We were supposed to be there all week for Bowel Management/Laxative trials but he decided with Addison it would be best to treat her like a kid with Hirschsprungs, even though she doesn't have it, because thats the way her body seems to work.

So the bad news is, the plan is to irrigate* her 2-3 times a day. (If this is your first time reading the blog - see the asterisk below for more on rectal irrigations. Its kindof gross so I don't usually write detailed info about it without warning people.) The idea of keeping her colon quiet and empty for most of the day is that she will have less pain and ideally we will be able to get on top of the C-Diff situation since there won't be old stool sitting inside of her spreading more bacteria. It should make the antibiotics more effective we hope. The irrigations arent fun for any of us, but the good side to this is that doing them means we get to stop ALL laxatives, and THAT means no more explosions all over her bed and clothes all the time! Which is good, because I've had more than a reasonable share of middle of the night changing sheets and clothes, and giving baths to last a lifetime in the past 4 months.

Anyway, we got to come home Friday night and things are going great with the irrigations so far, she's uncomfortable during them, but that's kindof expected at this point so hopefully we will get in a routine with it and it will get easier for us all. Dr. Levitt wants us to see his neurology and GI teams next week so we are planning on those specialties as well. I hope they prove to be just as awesome as the Colorectal team is. More updates as we get more information... but I couldnt have asked for a smoother trip!

*** Rectal Irrigation consists of inserting a catheter into the colon and using a saline solution to induce stool to drain through the catheter and into a basin. Its kindof like washing the colon down so the stool all comes out.