Another Bump in the Road

I'm going to ramble in this post as I'm just trying to get my thoughts together so let me be clear-- Madeleine hit a bump in the road today but she is okay and we're hopeful that there are no long-term consequences. With that out of the way, here's what happened and what I think about it.

Today, the surgeons requested that Madeleine have a contrast study done in preparation for her re-attachment surgery. This is a fairly common procedure that is done prior to re-attaching the intestines as it allows the doctors to see if there are any problems with the bowel before surgery. The procedure starts off with injecting contrast fluid into the bowel and then an X-Ray is taken to see if there are any areas that are blocked, strictured, or otherwise damaged/restricting. Madeleine had this procedure done one time before so we were familiar with the procedure. However, rather than injecting the fluid into her small intestines above the ostomy site, they instead wanted to inject fluid into the remaining rectum area below the ostomy site. For those that don't remember, Madeleine lost her large intestines in surgery from complications related to Necrotizing Enterocolitis (NEC) and only the small intestines and rectum remains. My understanding is that her existing rectum is about 1 cm long, so there's not too much down there. Still, the surgeons decided to inject this area with contrast fluid to see if any complications for surgery could be identified in advance.

The test didn't identify any problems but acutally caused some problems as the rectum area was perforated during the procedure and contrast fluid leaked into her abdomen cavity. The cause of the perferation isn't clear and it is hoped that the perferated area will heal itself. In the short run, the main concern is infection. The fluid itself is harmless and can be absorbed by the body-- it is water soluble. Still, as with any opening in the body, there is a concern that bacteria entered the abdomen cavity and they have added a third antibiotic to Madeleine's care to provide general coverage. Moving forward, the plan is to wait two weeks allowing the area to heal and the antibiotics to eliminate any infection. After this two week waiting period, the surgeons intend to re-attach Madeleine's intestines. In the meantime, the surgeons hope that Madeleine will begin feeding again.

If this issue only relates in a two week delay (it actually only amounts to a one week delay as surgery would have likely taken place late next week), we will be relieved and it won't make that big of a difference. At the same time, Kirsten and I are really frustrated by this latest setback and we're dealing with a wave of emotions. In no random order, they are:

1) Frustration that I didn't ask more questions about the procedure. The surgeons recommended it and while it seemed strange to me-- there's not much to examine in a 1cm piece of rectum-- I didn't push the issue.

2) Anger that my daughter was hurt. As any parent can attest, you hurt as bad or worse when your kid is hurt. When your kid weighs 4 lbs, I can't tell you how angry it makes me when I hear that she's in pain. I know the intention to hurt her wasn't there but it is really maddening to know that Madeleine is in pain and we can't do anything about it.

3) Frustration with the surgeons. For the first time, I feel like someone at Children's made a big mistake. I don't want to blow it out of proportion but I feel the need to communicate my frustration/anger/disappointment in a manner that ensures, as best as possible, that another mistake is not made. I need to ask more questions but I really wonder how necessary the procedure was. Additionally, I feel like the perferation was caused by a mistake. I don't know this for certain-- and probably never will-- but I'm definitely frustrated by the situation.

4) Worry that something else will go wrong. We keep thinking that all of the bad things have happened and that Madeleine is on the road to recovery and then.... this happens. There's a voice in my head wondering "what's next?"

5) Disappointment that we have to wait longer. Along with the worry, this is the other big issue. I know its just a week delay (hopefully) but I'm getting tired of visiting my daughter in the hospital. I can rationalize all I want about knowing that she's in a good hospital and where she needs to be, etc. but at the end of the day, I just want her home. When I wake up in the middle of the night, I don't want to call and ask someone how she's doing. I want to go into the nursery and check on her myself. Simply put: I'm ready to be a dad and any delay is frustrating.

Alright-- that's enough rambling on my end. I needed to get all of that typed out so that I can talk with her primary doctor this afternoon without blowing my top...

We'll report back when we know more about any other effects (hopefully none) of this setback. Right now, our hope is that she addresses her previous infection (not much has changed since yesterday) and can get back on the road to recovery including feeding and removal of her breathing support (she's on minimal settings right now). Two weeks from now, I hope to report on a successful reattachment surgery and lay out the final steps that will lead to her release from the hospital.

That's all-- thanks for your support and interest.

Brent