It's been a week?

Sorry for the lack of posts-- didn't realize it has been a week since I last posted. Life has been hectic between visiting with Madeleine in the hospital and working to complete the kitchen remodel. The remodel work is much less complicated than Madeleine so I'll cover that issue first. I'm glad to report that all appliances will be installed and the kitchen will be in full working condition today. We'll still have some tilework to do-- backsplash and some floor repair and we'll have a little bit of trim work and finishing up of things to do but the lion's share of the work will be completed by today and that feels great. We've been bad about pictures but will get up new ones soon. (may take a few more days.)

There is also some good news to report in regard to Madeleine-- she continues to do well, is putting on weight back on-- she's just getting back to 9 lbs-- and we're close to getting her home. While this is great news, Kirsten and I are quite frustrated with the hospital as we've gotten mixed signals regarding Madeleine's next steps. When we first came back to Children's from the rehab hospital (HSC), we hoped to return quickly to HSC and then come home as we had laid out a plan to ensure that Madeleine remained stable. However, Madeleine wasn't able to return quickly as the virus took a while to resolve and then she ran into the Thanksgiving holiday weekend-- transferring wasn't an option during the holiday weekend as staff at both facilities (Children's and HSC) were low. Additionally, HSC hasn't had a bed available this week for Madeleine so transferring earlier this week hasn't been an option. We understood the reasons for delaying our return to HSC and were pleasantly surprised to see Madeleine make significant progress at Children's. In the past week, she has been successfully weaned from a respiratory rate on the vent meaning that she is breathing entirely on her own. She still is attached to a ventilator for pressure support (when she breathes, it is easier for her to get a breath) and she gets a small amount of oxygen but that is all. Our plan is to remain at this level of support for the time being to ensure that Madeleine's lungs don't develop problems and also making it easier for Madeleine to breathe, thereby enabling weight gain. (less calories burned breathing = more weight gain.) Madeleine's also become much more aware as she's been weaned from atavan and

This is all great news and Kirsten and I are excited but we're also extremely frustrated with the level of communication we've received from the hospital. By and large, we've been impressed with the level of care that patients and families receive at Children's hospital. We're confident knowing that Madeleine's life has been saved a number of times during her short life and we simply can't thank them enough. That being said, the past few days has proven extremely frustrating as we've received numerous mixed signals regarding the next step in Madeleine's care. Some doctors suggested late last week that going home rather than going back to HSC made more sense. These doctors reasoned that Madeleine has been stable for over a week in the hospital, she has been successfully weaned from the respiratory support, and frankly questioned what benefit could be gained by going to HSC. They also raised the concern of infection that is always evident when one is institutionalized. With these comments in mind, we asked about the option of taking Madeleine home and reached agreement that this would be the path moving forward. For the past two days, we've made plans to bring Madeleine home as early as tomorrow morning and we've worked to coordinate the kitchen remodeling, our work schedules, the nursing schedules, as well as medical supplies to make it possible to bring Madeleine home tomorrow. (I didn't have time to post this information and now I'm somewhat glad.)

Today, we learned that during rounds, the doctors decided to send Madeleine to HSC and have set a date of next Wednesday for us to bring Madeleine home. We haven't gotten a medical justification for this decision and for obvious reasons, Kirsten and I are confused and angry. We're confused as this decision doesn't appear to have any medical justification and seems weird to transfer someone for such a short period of time. We're angry as we feel that Children's has presented us with contradictory decisions, has failed to include us in the medical conversation, and we feel like we're getting put through an emotional roller coaster with little concern for our role in Madeleine's care. Needless to say, Kirsten and I are anxious to voice these concerns (we're not the shy type) and we intend to discuss both our concerns regarding Madeleine's care plan as well as Children's decision making progress before we consent to the decision to move her to HSC.

I expect we'll have a team meeting with Madeleine's doctors this afternoon and we will work to separate our emotions surrounding the decision making process and our desire to bring Madeleine home apart from the medical decision that needs to be made. That being said-- I expect this to be a difficult conversation for all involved parties.

That's all for now. The important part is that Madeleine is doing well and we expect to get her home soon. We expect to resolve our concerns shortly and hope to keep in perspective the great care that Madeleine has received throughout her stay at Children's. Thanks for reading.

Brent