I haven’t written an update for several reasons. One, after last week’s positive progress we took a few steps backwards. Finn didn’t sustain the BiPAP wean and after about 24 hours we put him back on. That was really hard for me. It felt like we were moving in the right direction and then just as we took two steps forward we were taking a pretty big step back. Two, processing. I’ve needed some time to process a lot of what has been going on.
Since last week we’ve received the genetic findings. It’s official, Finn has an extremely rare genetic mutation that directly ties into his heart condition. We only know of five other people, yes FIVE, with this same mutation. All five have/had a hypertrophic cardiomyopathy. Of those five we only have data on three of them. Basically, the findings tell us that yes, this is the reason Finn has a broken heart, but not necessarily how to fix it. Because the sample size is so small and the information is so limited we will continue to let him tell us how to treat him.
The news of the genetic results is bittersweet. I am relieved that we know why and how his heart got to this point of failure. It’s reassuring to know that there is nothing that we could’ve or should’ve done differently to avoid it. It is, however, hard to accept that something like this can happen to anyone, let alone my child. As I said before, I did everything “right.” I read all the books, I ate right, I was active, I didn’t eat sushi or lunch meat or even have a sip of wine. I didn’t get a flu shot and I took my prenatal vitamins. I slept on my left side and talked to my baby daily. I was building my own super baby. How can a spelling error, a typo, put my whole life into such a tailspin? Did I do something to deserve this? We know he surely didn’t. He is so innocent, so sweet. Finn doesn’t deserve this, he should be at home in the safety of his mama’s loving arms and whining because his brother plays just a little too rough.
On Friday the 14th we met with the Mayo transplant cardiologist, Dr. John Johnson. Now that we know what we are dealing with we also know that we are eligible for a transplant should we need one. I came prepared (surprise!) with a notebook full of questions. Dr. Johnson sat with Jeff and I for almost three hours answering each one in great detail. I learned more than I ever thought I would need to know about hearts and trading one in for another. For example, did you know that before the age of one a baby can receive any blood type for a transplant? Also, the average waiting period for a child is 2-4 months and the actual surgical procedure takes about 20 minutes. He compared it to putting together simple Ikea furniture. It’s the after that is difficult. The anti-rejection drugs and problems associated with trading one disease for another. If you have any other questions I am sure I asked them and have the answers. Try me!
It turns out Dr. Johnson has a 3 month old boy. Born January 1, 2017 and therefore only 12 days older than our Finnegan. Knowing now that we qualify for a heart transplant and that he had met Finn I asked him point blank, “If that was your son in there, would you choose transplant?” He told me, “Not now.” That his ultimate goal is to NOT transplant a child, anyone for that matter. He thinks we should give Finn a chance to grow and see what he does. Based on his physical presentation we don’t need to think about transplant as an immediate need but it’s good to be informed on our options. Hopefully we never need to me Dr. Johnson again, but if we do we at least have a better idea what we are dealing with.
The rest of the weekend was uneventful. We’ve upped some of Finn’s drugs now that we know about his genetic situation and we let him rest with the increased respiratory support. He needs to get bigger and stronger so we can get back to eating and go home.
This morning during rounds Dr. Dassenko said he wanted to wean Finn’s BiPAP (again). I was shocked but excited. This time I hope it sticks. When he came in to act on the orders he said we need to keep him warm so that his heart isn’t working too hard to keep his blood flowing to his extremities. I passively said that it would be easier if he could wear clothing. He looked at me, smiled and said “okay, as long as they have snaps.” YAY, jammies! Once again we are starting to make strides in the right direction but I don’t want to write about it and jinx us again.
Send all your positive vibes, prayers, love and light that we can move ourselves forward. I am ready to take my baby home and start the healing. We need to put our family back together again and we can’t do that living in separate cities.