This is the journey through our daughter’s Congenital Heart Defect and eventual heart transplant. When you “decide” to go down the transplant route as it is called there are certain things you find out after you sign on the dotted line.
As many of you know, immediately before Zoe was born I was connected to the financial services at Children’s Hospital and our family was accepted into their aid program. This is no little thing. It meant regardless of how our insurance worked out we would not have to worry about hospital bills….at all. That aid […]
Our week was peppered with doctor’s appointments and a dash of fun over at a friend’s house.
We were supposed to have Zoe’s Synergist shot on Tuesday but it didn’t get shipped to us so we had to reschedule and do it yesterday morning (thank you to the Optioncare facility for being so flexible). We are […]
We seem to have come through the weekend unscathed and after the first bit of freaking out I felt very calm the rest of the weekend. Noah hit about 11am on Saturday and seemed his old self again. By Sunday he was completely fine and spent part of the day playing outside. Although not sunny, […]
We are now on round three of Noah and the stomach flu. Poor kid. He’s never had the flu so much in one season. The previous two bouts were really mild and neither Zoe or Paul and I ever caught it. This one is more severe and I confess I’M NERVOUS. Noah had a bad […]
On my previous post you probably saw that Zoe is due for her monthly Synergist shot this next week. This medication is the one shipped to me from the insurance company. Last month was a debacle but when I called to refill it this month the whole process was smooth like butter. I called two […]
Tuesday: Immunizations….same old thing. Only notable thing to mention was the pediatrician didn’t have chalk in the room for the chalkboard (Noah wonders how that can be possible).
Wednesday: Physical therapy. Zoe would like everyone to know that just because you throw a whole lot of toys in one room does not mean instant fun. She […]
This is obviously an issue close to our heart; without a transplant Zoe was projected to live maybe 3-4 months. April is National Donate Life month. According to UNOS (United Network for Organ Sharing), at this moment there are 96,039 people on a waiting list for various organs. 96,039 families are waiting […]
Well, it’s a psychological victory…we’ve started weaning her off the Verapamil. However, in reality she is now taking a greater volume of medicine because for every 1/10 of a ml reduction of Verapamil there is a 1ml increase in her Captopril. She will have labs next week to check her Potassium level to […]
Immediately after Zoe’s transplant I struggled to find words I will use to explain to her why she cannot be flippant about her responsibilities (the ones I temporarily hold) in taking care of this heart. These were the reasons that flooded my mind:
It is not yours to squander.
It came at a price.
You do not live only for yourself […]