Madeleine: The Roller Coaster

This will likely be a long post, so let me get the important details up front: After some extremely difficult days, Madeleine has stabilized and is "doing well." I've used the quotation marks because she's still on a ventilator in the CICU but she has come a long ways in the past few days and we're feeling much better about her short and long-term prognosis.

That's the short story. Here's the long one: Starting on Thursday afternoon, Madeleine began to struggle with her oxygen saturation levels and her oxygen dependence grew rapidly. She finally stabilized Thursday evening and the doctors told us that our "day of crisis" appeared to be over. Friday was a relatively easier day as Madeleine appeared to stabilize despite being very reliant on oxygen and other ventilator support. We hoped that this stable trend would continue through the weekend but Saturday turned into another day of instability. In addition to struggling to maintain her oxygen saturation levels, on Saturday, Madeleine's blood pressure fluctuated from very high pressures to dangerously low pressures. Madeleine's nurse had never met Madeleine before Saturday and by the afternoon she looked at Kirsten and I and exclaimed "she's just really frustrating and doesn't make any sense." I think you can categorize such a statement as "preaching to the choir."

Fortunately, starting on Saturday night, Madeleine finally appeared to get her act together and in the past 24 hours, she's made major progress. She has greatly reduced her oxygen dependence to 50%, has stabilized her blood pressure allowing them to wean her dopamine level (down to 8 mcgs from 12) and the doctors are beginning to make plans for tomorrow's weaning. (They don't make plans when they're concerned about another crisis.) Assuming Madeleine stays on course, tomorrow they hope to have her dopamine down to 5 mcgs (a low level) and then will turn to reducing the nitric oxide-- she's currently at 20mcgs (a high level). In the next few days, we hope to slowly wean the nitric oxide, the dopamine, the oxygen and other ventilator settings. If all goes well, the doctors would possibly talk about extubating Madeleine by the end of the week.

We'd like to be optimistic about such a short timeframe but honestly we're dug in for the long haul as we've learned (or re-learned) these lessons in the past few days:
1) Pulmonary hypertension is extremely complicated and when you are on a ventilator and sick, you can expect to have challenges-- weaning is never simple and just when you think things are going well, they can all fall apart.
2) The ups and downs are extremely frustrating and can be dangerous. While this reality is difficult to accept, we learned this fact on Saturday and it at least helped us understand why Madeleine is having such a difficult time-- understanding helps us keep things in perspective.
3) Madeleine is an extremely frustrating and difficult kid but is also tough as nails. If you're a frequent visitor to this blog, you already know this fact. Kirsten and I have had some difficult days and we've honestly questioned whether Madeleine would make it through these challenges. We're not out of the woods yet but we've been amazed by Madeleine's will to live and are confident that she's going to make it through these challenges. She just doesn't quit and I love that about her. (Though I'd love her if she could find a way to get healthy and stay that way.)
4) We have an astonishing network of friends and family. Here's a few examples of the support that we've been amazed by:
- During our difficult day on Saturday, two of Madeleine's long-time caregivers came to Madeleine's hospital room and talked to us, explaining how pulmonary hypertension helps explain the ups and downs. Their ability to put our experience in perspective and to empathize (I can never remember if its empathy or sympathy?) with us was truly remarkable and helped us unwind and sleep well on Saturday night. (The important of sleeping well can't be overstated.)
- Kirsten's co-workers, sensing that we were down, put together an amazing basket of goodies including food for the week, lotions, magazines, and tons of other items.
- Our parents have agreed to travel out here in the next few weeks to help support us as Kirsten makes the transition back to work (starting next Monday). Given the uncertainty surrounding Madeleine's situation, this flexibility makes it much easier for Kirsten and I to continue working, knowing that Madeleine will have an advocate in the hospital.
- One friend of ours demanded my keys so that she could go to our house and clean our kitchen. She'd heard Kirsten complain about not having enough time to clean and she practically backed me against the wall telling me that I needed to give her my keys so that Kirsten wouldn't have to go home to a dirty kitchen. (true story)
- Our close friends and neighbors allowed us to stay over last night to watch the Penn State game despite being so tired, they both fell asleep in the third quarter. We didn't want to leave as VA. Tech was on and pre-empted PSU in our house. (They have the Game Day package.) This is just one example of this couple's constant role as our "surrogate DC area family" as they're the ones that help us pick up the pieces on a daily-- and sometimes hourly-- basis.

In short: Kirsten and I continue to be amazed by the outpouring of support that we've received. (These stories don't take into account the countless number of people who have listened to us vent about Madeleine and the difficulties we've faced.) We're humbled and honestly don't feel worthy of such kind acts. We simply hope that folks know how appreciative we are even if we can't get thank you notes out in a timely fashion.

I'm sure my brothers are reading this and right about now are thinking "Geez Brent, cut it with sappy crap" so I won't continue any further. I'll report back this week as the hospital sagas continue and hope to repot that the Madeleine roller coaster continues on this smooth section. Have a good start to the week and thanks again for your support.

Brent and Kirsten