Kaley (post surgery) - out of bed today
Doesn’t she look thrilled that I am taking a pic?!?!
I guess I better write an update post since I am getting lots of emails asking how Kaley is doing.
As I posted on Wednesday night, Kaley was rushed into surgery after they took an Xray which showed a perforation in her intestines following her morning colonoscopy. The perforation could have been done by the scope during the procedure or it could have happened earlier and it only tore more when they put air into intestines for the procedure. She had been having more and more pain each day over the past week which makes me believe that maybe something was going on before the colonoscopy and this just made it bad enough for red flags to go up. In all honesty, after seeing pictures of her large intestines, surgery was most likely going to be needed anyway because they were SEVERLY diseased all the way around from the colitis. We were planning to try an IV med that day (and had actually started it when they realized she needed the surgery ASAP) but they really didn’t think it was going to work and had already sent the surgical team in to talk to me about what the surgery would entail and that the next scheduled time available would be next Thursday. Luckily, they got the results of the Xray right when the surgical team was in the room talking to me. SO pretty much after they had gone over everything and were walking out, they were stopped by the Dr and came back in to say “plans have changed, we need to do this NOW”
Obviously I had not prepared for that and pretty much lost it the second the surgeon told me but my mom and Kevin rushed to be here as well as a friend of mine and Kaley’s other grandma and uncle so I had lots of support to help get me through the 2 hour wait. Because of how damaged her large intestines were, they had to remove them ALL and because her colon had perforated they had to cut her wide open to make sure nothing was leaking through her body and clean it out if it had.
The surgery went well and she spent yesterday pretty much sleeping. When she was awake, she was in a daze from the pain meds (she has a button to push that puts dilotin into her IV). Today she has been more alert and even got out of bed for a bit (they really rush you to do that after surgery to get everything moving again inside you). We were finally able to really talk about the surgery and what will happen from here on out. She had been in in sooo much pain for so long that she was just glad to not be hurting like she was. The effects from not having her large intestines is kinda better than living with severe colitis (in our opinions) so as long as the next 2 surgeries (over the next 4 months) go well she will have a better life and not have to deal with Colitis flareups and constant meds.
Again I want to thank everyone for their love and support and prayers over the past month. It has really helped both me and Kaley get through this horrific situation. Through it all, we have learned just how blessed we really are !!!! **we should be able to leave in about a week depending on how fast she heals and is able to start eating on her own again (she has been on 24 hour TPN through her PICU line for awhile so they will have to gradually switch her over to regular food)