Back to HSC Today

After much debate, we've agreed to transfer Madeleine back to HSC for a planned short stay. We're not setting any dates as that just sets us up for failure (I felt like Charlie Brown kicking the football yesterday.). However, the "medical plan" is to ensure that Madeleine can spend a week at HSC without any significant medical intervention. If this occurs, everyone would be more comfortable sending her home.

There are positives and negatives associated with any decision we make. The positives of going to HSC are focused on ensuring that Madeleine's medical issues are stable and we won't need to rush back to the hospital. The downside of HSC is that we run a higher risk of getting an infection at HSC than we do at home.

When we do come home, we run the risk of having to go back to the hospital for additional changes and we don't want to go through any additional admissions. That's the major downside we're trying to avoid by going to HSC. There are also numerous positives associated with bringing her home and that's why we're anxious.

Two issues became clear to Kirsten and I yesterday during our discussions with the hospital. The first issue is that we're no longer going to make plans for bringing Madeleine home until we're sure that the entire medical team is in agreement. We made it clear to the staff at Children's how upsetting and frustrating it is when the "plan" changes so frequently. It is emotionally draining and frankly irresponsible to get our hopes up and then change the plan. Obviously the doctors can't prevent Madeleine's health issues from impacting the decision to go home but when the plan changes while Madeleine remains healthy is simply wrong.

We also learned yesterday that the attending doctor's at Children's differ on the medical plan for a child of Madeleine's complexity. As a team, we have agreed that in spite of Madeleine's multiple health challenges, it is important for us to bring Madeleine home as we feel this is the best approach to address her long-term medical issues. While this has been the stated goals of the "medical team" (including Kirsten and I) other attending doctors disagree with this approach and while they haven't told us this directly, these differing beliefs have obviously impacted decisions regarding Madeleine's care plan.

In the end, we ultimately agreed with the decision to transfer Madeleine to HSC. However, we were disappointed in the manner in which the decision was made (constant changes) and we also disagreed with the concerns centering around long-term institutionalization for Madeleine. Its a complicated and frustrating situation and we hope that by airing our concerns and frustrations we can help to improve communcation and medical decision-making in the CICU.

Lest I forget, the most important issue in this whole situation is Madeleine's health and that is going fantastic. While we were talking with the doctors yesterday in Madeleine's room, Madeleine was layoing in bed alternately staring at her toys, smiling and wiggling all around. She's doing great and we can't wait to get her home and watch her grow.

That's all for now. Thanks as always for your interest and support.

Brent and Kirsten