Better Information Today

Kirsten and I met with the surgeon that ordered the contrast study yesterday and I spent the morning meeting with more doctors and nurses this morning and we learned a great deal. Our first question focused on why the contrast study was conducted. The surgeon ordered the study yesterday to ensure that, in advance of any surgery, they identify any possible problems in the rectum. No problems were expected in such a short length of bowel but given Madeleine's complicated history they simply wanted to make sure that everything was healthy and no challenges would pop up during or after surgery. The surgeon also explained that he entered the order yesterday morning expecting that Madeleine wouldn't be taken down to the radiology lab until at least the afternoon. Typically, there is a long line for the radiology lab and the fellow thought he would have more time to talk with the radiologist in question. Unfortunately, the lab had an opening and Madeleine was taken down late yesterday morning before the surgeon had a chance to explain Madeleine's case to the radiologist. The surgeon explained that in most cases with babies with surgical NEC, the small intestines is primarily affected by the infection and therefore, the contrast study is ordered to examine the large intestines. Therefore, a large tube is inserted into the anus and the large intestines are filled with contrast fluid. In Madeleine's case, there are no large intestines and the insertion of the tube caused the end of the rectum to perferate. When the contrast fluid was pumped into Madeleine, some of this fluid escaped through the hole into her abdomen. Kirsten and I were obviously concerned with this communication failure and we discussed at length with the surgeon as well as Madeleine's nurse practitioner the need to be more attentive to Madeleine's special needs. This message apparently got through last night as I was swamped with doctors and nurses stopping by Madeleine's crib this morning to discuss her case and determine next steps.

In addition to learning what happened during the procedure, the surgeon also raised the issue of when the re-attachment surgery should be conducted. While acknowledging that a mistake was made, he did say that he would not typically expect the rectum to perferate even given the mistake and this may indicate that Madeleine needs to grow and improve her nutritional standing before scheduling the re-attachment surgery. In fact, we think this mistake could turn out to be a blessing in disguise as the worst possible situation would be to have complications arise from re-attaching the intestines too soon.

In the immediate future, surgery is not being discussed as the most important issue is to ensure that Madeleine overcomes her existing infection and avoids any further complications/infections. So far, things are looking good as her lab work came back today and her numbers are trending in the right direction. In the next few days, the doctors hope to also begin feeding Madeleine and they are going to focus primarily on getting her as nutritionally sound as possible. The plan right now is to re-assess where we are in two weeks and then determine any further surgical plans. Our hope is that Madeleine will begin to feed soon and will begin working on bottle feeding again. In two weeks, we'd hope she is near full feeds (getting all of her nutrition from breastmilk/formula) and is improving with her use of the bottle. If we reach that point in two weeks, we'll then ask the question "should we schedule the re-attachment surgery or should we take her home with the ostomy and re-attach at a later date?" If we choose to bring her home with the ostomy, we'll establish benchmarks for when the final re-attachment surgery should be scheduled. We definitely plan on having the intestines re-attached, we just need to determine if it makes sense to do while she's still in the hospital or if we should bring her home and schedule the surgery down the road once she's reached a more stable weight, etc.

In short, we're still frustrated and disappointed but our anger, for the most part, has subsided. We'll continue to closely monitor Madeleine's health but we're not going to take an aggressive stance with surgery. Instead, we want her to do the things that 3 month old babies should do: feed, sleep, cry, etc. and we'll figure out when to "hook her back up" once we know that she's stable and the surgery makes sense.

Thanks again for everyone's support-- we're continuously amazed by the outpouring of support we receive. Madeleine will get over this bump and we hope to one day look back at June 4th as just a small bump in the road.

Take care,

Brent and Kirsten