Monday Update

Hey Folks,

Sorry for the short, disjointed update last night. I was exhausted and just wanted to get something up. Madeleine is doing good today and before I get to all of the details, I wanted to make sure to send out a specifc thank you. This one is to the nurses, doctors, and staff of the CICU (I think you're checking the blog now)-- THANK YOU! Kirsten bought a card on the discharge and called me asking what to say. I think we ended up putting something like "How do you thank someone for saving your daughter's life?" This was our second extended stay at Children's and again, we were floored by everyone's support and care. Madeleine had some extremely difficult days-- as did Kirsten and I-- and we can't say thank you enough to those that cared for Madeleine while dealing with her crazy, question filled parents. You are special people and we can't thank you enough.

Okay-- with that much needed thank you out of the way-- here's an update on Madeleine at HSC. In short, the transfer to HSC is truly paying off. We were reluctant to move to HSC as we really wanted to get Madeleine home but we're definitely glad to have made the decision. The first reason is that HSC is a very comfortable place and is a perfect step down from the ICU. The nurses are still in the room with Madeleine but they are assigned to three children meaning that they're not able to spend as much time with each child but can monitor her very effectively. Additionally, they take therapy very seriously at HSC and we're confident that Madeleine will be pushed to develop. Third-- and perhaps most importantly-- they're able to medically monitor Madeleine closer than we can at home. As I stated last night, Madeleine has been running temperatures intermittently and they've been able to take blood and mucus samples and have ruled out-- so far-- any infections. Additionally, they've taken an X-Ray and are confident that her lungs are doing well. At this time, they're chalking up the temperatures to a round of vaccinations given last week and also to the ongoing wean from Methadone and Atavan. Madeleine was placed on these drugs a few weeks ago to help wean her from the sedatives required when she was intubated. The head doctor at HSC explained to Kirsten this morning that methadone is an extremely long acting drug and explained that the CICU weaned Madeleine down on her methadone levels last week but the effect is now just hitting her. We're going to be weaning from these drugs for a few more weeks, so we can expect some strange fevers, etc. The nice part is that HSC can track the fevers and can be ready in the event that any infection presents itself. If we were at home, we'd have likely made a trip to the ER and wouldn't have slept from worrying about what was wrong. We're still worried-- that never goes away-- but it helps tremendously knowing that she's in a facility that can manage her situation effectively.

On the home front, we've spent a great deal of time getting ready to renovate our kitchen. Demo starts tomorrow and we have a crazy schedule that concludes next Monday with the countertops being installed. (Yes-- we're fully aware that we're crazy.) Its an extremely condensed schedule we've put together and we're hopeful that we can stick to it. If it happens, my uncle Mike should be nominated for some type of remodeler of the year award.

That's all for the update now. Check out the blog for a few more pictures-- Kirsten should take some more this week. You'll see Madeleine with the Trach for the first time. Its a bit strange looking but she doesn't seem to mind it and it seems to help keep her stable. We'll also be posting the Before, During, and After construction pictures so you can see the dual craziness of our home life.

Thanks again to all-- take care.

Brent

PS-- If you see or talk to my Uncle Matt, tell him to get his butt out of the hospital-- we have enough sick folks in the family. Matt's never been much for cheesey stuff so I'm not writing anything special. Get healthy old man! (Its nice to return some of the tough love he's famous for doling out.)