This is a guest blog by my sister Catherine about her daughter Josie. Josie is a miracle cardiac kid who is about to undergo her fourth open heart surgery. There were many minor surgeries and procedures throughout her 25 years of life, but the open heart surgeries are the biggies; the life-pausing, life-giving, rides of stress and fear. This time, Josie is old enough to comprehend the whole scope of things. This is our peak into the world of the parent of a medically fragile child. And a small peak into the toughness required from Josie. From Catherine:
Here we go again
Four years and four months, that was the last time I sat in this waiting room while Josie got an MRI. This will tell us what the next journey will look like. However, this time, we have an idea. We know that it will be open heart, and we know that it will most likely be in the spring before she turns 26 and loses our insurance.
The new unknown is if it is better than they think, and doing it too early is not necessary. Highly unlikely, but always a possibility.
During her Cath lab four years ago, they were only able to put stents into where her pulmonary valve should be. Every time they tried to widen the stent to get the new valve in, it pinched a coronary artery. They had to stop and just be happy with the stent that cured the narrowing. Now instead of a valve opening and closing, it is just wide open with nothing to stop the blood from flowing back into the right ventricle. The doctor felt that four years of that was all she could take, hence, our next journey.
After the MRI, we will see her cardiologist, Dr. Rocchini, to hopefully give us a timeline to plan out the coming months. Dr Rochinni will not let go. He will never let go. Movie reference: Dr. Rochinni has been with us since day one. He is truly invested and just does not seem to want to give Josie up to an adult doctor, even though Josie is way past the age of pediatric. Don’t get me wrong, we are super thankful that we have had Dr. Rochinni. We would be super sad to have to change doctors. But I just don’t know how much longer we can call Josie pediatric.
Today the waiting room is lively, with kids everywhere, and people coming and going. In the waiting room are doors to a music room, with music flowing out with all the good oldies like The Logical song, and now I can’t think of the other songs that they were playing because only the logical song is in my head, taking over any other songs I may have heard.
This time, we had a plan: Josie kept her phone for as long as she could when she went back, so she could give me updates. Fingers crossed she doesn’t fall into the machine this time. She texted 20 mins ago that she was going in. Here’s hoping!
Another difference, for this appointment, is that Chris has joined us. We are here in force.
I think the hardest thing as a parent is watching, for the first time, your young adult try to navigate this scary future with open heart surgery looming. She runs the gamut of angry, sad, and scared. She even went and adopted a kitten in the hopes of helping her deal with it all. She already has a dog and a therapist. I guess a kitten is the next logical step. Song reference: Logical Song.
We are now at the one hour mark. With our next appointment in 40 mins. 🤞
I think I’ll take a nap.
Noon has come and gone, still waiting. It was a good nap.
Coming up on two hours.
Two hours have come and gone. After a long pause in music, we are now serenaded with classical music from three guys. It is a nice distraction from all the waiting.
We just got a text that she is done. Only a 2 ½ hour MRI. Could have been worse.
Just finished with Dr. Rochinni. It has been confirmed. The Fellow working with Dr. Rochinni had the pleasure of confirming what we already knew. Poor Josie could no longer hold back all her emotions, and tears started to fall. This has been very difficult for her. It was so much easier when she was young and did not understand the gravity of the situation. We now wait, with bated breath, for the phone call from the Cardiology Surgery Department to find out the date of surgery. We know that the goal is the month of January. This will leave us with an insurance buffer if Josie were to get sick.
Knowing this was coming, we had already booked a second family vacation over Christmas. The Cremer family will be celebrating Christmas in St. Augustine. Josie’s wishes are that no one gives her pity. What she needs is love and kindness and maybe a “you got this” and a big hug.
UPDATE: Josie’s surgery is scheduled for January 11, 2024.