Successful Surgery

Madeleine's tracheostomy was successfully inserted yesterday and she is recovering very well. The surgeon was extremely pleased with the procedure. In addition to inserting the trach, they took a "look" with cameras to assess the extent of any damage done by the previous ventilation tubes as this is a risk whenever you are intubated. There was some swelling in the airway that could be attributed to the presence of the prior intubations. They can re-assess later once the swelling from surgery has decreased and the hope and expectation is that this will go away.

In terms of immediate recovery, we've been told to expect Madeleine to experience some pain adn discomfort for the next 5-7 days. They're giving her medication to keep her comfortable so we hope the pain she feels is minimal. Once past that timeframe, we expect her to be much more comfortable.

The hardest part about the tracheostomy so far is the cosmetic nature. In some ways, it is much better as she has far less tape on her face-- only the feeding tube's tape remains. On the flip side, it is hard to see another "medical apparatus" on Madeleine. I know rationally that she needed it and that it will go away once its no longer needed but it is still tough to accept. I'll get over it-- just being honest about the frustrating aspect of the surgery.

In terms of plans moving forward, we're meeting with Madeleine's whole team of doctors and caregivers today and will lay out the plan going forward. We have tons of questions including:

- Expected time remaining in the hospital?
- Expected time in a rehabilitation hospital (if any)?
- Medical supplies we'll need once she gets home?
- Nursing care we'll need at home?
- The impact on lifestyle when Madeleine is on the ventilator.
- The impact on lifestyle as Madeleine is weaned from the ventilator and then breathes through the tracheostomy?
- When can we start to wean off the ventilator? What evidence do we need to look for?
- How long do we expect her to need the ventilator? What milestones will indicate that she won't need it?
- How long do we expect the trach to remain? What milestones will indicate that it can be removed?
- What other procedures may be necessary to ensure that Madeleine's airway is protected? This includes any surgeries to strengthen the valve at the top of her stomach to prevent reflux and posible aspirations. How do we make such decisions?

We've had preliminary discusions on all of these issues but we want to raise these questions in the family meeting so that we reach a consensus with her medical team. The folks at Children's have been great-- especially the CICU folks during our stay-- but getting everyone on the same page is difficult and the family meeting should help facilitate such communication.

We'll post the results of the meeting when we get some time following the meeting. Thanks again for your support.

Brent and Kirsten