It has been a very long day and a half in Boston. Natalie got here on Tuesday, and was taken to her new temporary home in room 19, ICU at Boston Children’s Hospital. She was doing well, all things considered. That same evening, out of nowhere, she spiked a fever of 107, and her blood pressure dropped. They’re still not sure what the cause was.
I flew out as soon as I could, and finally got here yesterday just after lunch. Natalie was hardly recognizable with all the fluid that had built up within her body. Her fever subsided, but her body was unable to shed fluid. After several discussions with the surgical team, we decided to put Natalie on a heart & lung bypass machine called ECMO. This seems to have helped, as she is starting to look better, her blood pressure is back within normal range. The machine is helping her heart do its job, and the hope is that she can recover to the point where they can take her off the machine at some point. The time you can stay on the machine is limited, so we’re praying that her body will recover so that she can wait for her heart.
There is still a lot of uncertainty, and the outlook is very uncertain. But, at least we’re moving in the right direction, and we’re in a MUCH better spot than we were 24 hours ago. We really appreciate all the prayers, and they’re needed now more than ever. The next days will be very important, as she continues to shed fluid, and we find out if her kidneys are going to recover. We’ll do our best to keep you all updated.
Well, as the title suggests, we’ll be on our way back to Boston. Our surgeon in Minneapolis is leaving to begin a transplant program at the Children’s Hospital in Kansas City. Once he leaves, there will be no one in Minneapolis who can handle a transplant as complex as Natalie’s. So, since they are already familiar with Natalie at Boston Children’s, that is where we’ll go to have wait for a heart and have a transplant once one comes available.
Obviously, this isn’t what we had wanted. We like being in Minneapolis where we are closer to home, have family in town, and I can drive to Minneapolis on the weekend or take a 1 hour flight. However, this is what is best for Natalie.
The original plan was for Heidi and Natalie to leave via air ambulance tomorrow (Thursday), but Natalie spiked a fever this morning, and they are suspending those plans until Monday. That could change, but that’s the tentative plan.
Natalie has been doing well, other than coming down with a couple of infections. At this point, she’s been sedated and on a ventilator so long, that infections are inevitable. We’re praying that she can recover and get to Boston, and hopefully they can move forward and get her off the ventilator so she’s able to move and be stronger. She wants to be held and go for walks, and God knows we miss holding her and taking her for walks.
That’s the update we have for now. We will update further when we have more details and a better idea of what to expect going forward. Thank you all again for the prayers, texts, and phone calls. We appreciate them very much.
We’re posting this one to ask for prayers for a very nice family that we’ve gotten to know, the Scapanski family. Their little girl, Mylee, passed away last Saturday, August 30.
While you’re making your second home (temporary first home for Heidi and Natalie), you get to know others who are in the hospital. You get closer to some of them, and Mylee was definitely one of them. She was the happiest kid I’ve ever met, even though she had spent her entire life in ICU. That’s not hyperbole, she was ALWAYS smiling and happy. If you needed to get a shot of happiness, you just walked by her room and looked in. She would be playing, laughing, or jumping around in her little crib. She was just learning to walk, and was full of life, energy and joy. She was special to all who got to know her, and everyone in the ICU loved her.
Mylee had a Berlin heart, which is basically an artificial heart that does the work of your heart when your heart can’t do the work it’s supposed to do. She had this device longer than any other child has had one in America (there was one child in Germany who had one longer). A cannula had slowly deteriorated, and last Saturday, it failed. There was nothing they could do to save Mylee. Even though the nurses, doctors, and surgeons see tragedies like this far too often, you can tell that this one is different. Everyone had come to love Mylee, and losing her has been especially hard.
We ask that you pray for the Scapanski family as they go through this horrible time in their lives. Also, pray for the nurses, doctors, and everyone else who has watched Mylee grow up. She was a very special little girl.