Last month I told you that I had met with Maddi’s local surgeon and felt 100% sure that he could NOT help us with the day to day care of Maddi any more and that we were heading to CO to a bowel management boot camp.
Two days ago Maddi and I flew to CO (after fighting with the surgeon’s office to get her medical records sent…and they never were).
She was great on the flight and slept the whole way. We’re staying with my sister (who’s almost 8 months pregnant), her husband and their 2 yr old daughter so we’ve gotten a bonus family visit too.
On Thursday morning we got up and headed to the Colorado Children’s Hospital for a long day of testing. I requested that they add in additional testing because I wanted someone that had experience with kids with the same kind of issues as Maddi to evaluate the surgeries she had done in Austin.
But first she had to do a contrast enema study. That entailed 5 adults holding down one 2 yr old while they gave her an enema with dye in it and took xrays so they could see the outline of her entire colon. That was fun! Then I spent the rest of the day cleaning her up from this procedure…and cleaning up puke!
We waited a LONG time for the next test and I started to lose faith in my decision to come here. They left us in a room for 3.5 hours, never updating us on why were waiting. By 3:30pm (her test was supposed to be at 2pm and we’d been in the little pre-op room since 11:45am) I was PISSED! Finally at 4pm they took her back and by 4:15pm the dr was out talking to me.
He said he was pleasantly surprised by her surgeries and thought that they had done an excellent job. GREAT news!
But he said that the xrays had shown that she was very backed up. He felt that going with a daily enema plan was the best course of treatment for her (our belief too which is why we’re here esp since being on 3 ex-lax a day isn’t working).
Then today we went back to learn exactly how to do their daily program. There are two other moms/kids in the program this month and it was great to talk to other people who are in the same boat as us.
We met with the nurse practitioner this afternoon to get some more specifics about her treatment plan. She also showed me Maddi’s xrays. They look really bad. It’s very sad that she could have gone on for years like this had I not insisted something be done. And in talking more with the NP, she revealed that they feel that Maddi will never get off this enema plan. That was hard to hear, but since the 3 months since her colostomy closure have gone so badly, it’s not really surprising. But to be told that this is your life – her life – forever may take some time to process. Of course they can’t be 100% sure, but they have dealt with other similar kids and can speak from experience.
So we came back to my sister’s house and tried our first enema according to their directions. It didn’t go well – but that’s to be expected. I go back for a parent support group meeting tomorrow and then she’ll have xrays Mon, Tues and Wed mornings plus we’ll meet with the NP to make sure that the program is working for her and to troubleshoot what’s not.
It’s been a long, difficult two days so far. But I feel like we are on the right track to getting life under control again.
I’ll let you know next week how things end up here!
