Jonathan has several heart buddies who were all born right around the same time with some variance of HLHS. In the past (almost) three years since his birth we’ve met many more HLHS heart buddies close in age to Jonathan. Most of these kiddos are also preparing for their Fontan open heart surgery, with varying degrees of urgency. The Covid-19 situation has caused significant delays in surgery scheduling for the kiddos who can tolerate waiting. For the kids whose hearts couldn’t wait, they’ve had to be in the hospital with only one parent, at a time, allowed to be present. The thought of only one parent with no support system, alone in waiting, during an 8 hour open heart surgery boggles my mind.
So many families have been through this and worse, with the necessary restrictions for safety, during this time of pandemic. There are so many kids who are hospitalized who aren’t able to see brothers and sisters, grandparents, cousins, aunts and uncles. They aren’t able to have uplifting visits from friends, or even the security of having both mom and dad or step-parents in the room at the same time.
We’ve been praying God would intervene with this virus. I think everyone has been praying for that, for health, for safety, strength, and endurance. We’ve also been praying for the families and children who have been impacted; who have had to be hospitalized and have procedures during this time. We’ve also been praying that by the time we get to Jonathan’s surgery the restrictions would be lifted enough to at least allow Dan and I, to both be present during pre-op, surgery (waiting room), and post-op.
When we finally got the phone call with a date for Jonathan’s Fontan, we were told that the visiting restrictions only allowed for one parent per 24 hours. That means whoever brings him into the hospital to check in for surgery in the morning is the only person allowed to be there for Jonathan for the next 24 hours. After 24 hours, we can switch out and the other parent can come in for a minimum of 24 hours. No other visitors, period.
In the brief amount of time that has passed since that phone call, Jonathan’s surgery date has changed a couple of times. As of now, he is officially scheduled for June 12th. In the past week restrictions have also lifted enough to allow two parents to be present at the same time. While this is still not an ideal situation for many families, we are thankful for this news. Obviously, anything could change, at any moment between now and June 12, but we are hopeful it will only get better.
During March, April, and most of May, any heart surgeries that were scheduled, or supposed to be scheduled were delayed unless it was an extremely urgent or emergency situation. We are so thankful Jonathan has been stable enough that it was safe to delay his surgery.
For many of us families who have heart warriors anticipating Fontan surgery this spring and summer, prior to 3rd birthdays, we had planned lots of memory making family activities prior to surgery, and big 3rd birthday celebrations after recovering from surgery. With isolation and quarantine, surgery delays etc. etc., this has not happened in the way anyone planned or imagined.
Children’s Hospital has been scrambling to schedule all these surgeries and procedures that have been delayed/canceled over the past few months. One of our good heart buddies has now been rescheduled for a surgery date that may land him in the hospital during his big birthday. This is such a devastating blow. His family is so thankful that he is alive and thriving, that he is healthy enough to have his Fontan surgery. It is so hard though, not to get to see precious loved ones prior to a major operation, and celebrate a milestone birthday in the hospital.
I have been devastated for all the high school seniors and their families who have missed all of the senior year celebrations and graduation. I have cried and cried as I’ve watched many of the videos of the “make-do” graduations and celebrations schools performed. It’s this same strange, mixed sense of grief and joy I feel for our dear heart buddy and his family. Please keep Jonathan’s heart buddy in your prayers that his surgery date changes or that he recovers so swiftly and miraculously from surgery, he will be able to celebrate his birthday in style!
Time is precious for all of our amazing heart warriors. Every milestone is a celebration. Every day is celebrated and not taken for granted.
Right now we’re praying for all of our friends who are facing Fontan in the next couple months under these unusual and scary circumstances. The future is unknown, but we know that God is in control.
“Even when I don’t see it, you’re working.
Even when I don’t feel it, you’re working.
You never stop, you never stop working.”
–Way Maker, Sinach
Walk As Lions 