He Did it Again

Quite a few times I have been told "I just cant read your blog, it's too sad" or "I can't imagine..." My personal favorite is "I am so sorry for you." I'm not entirely sure how to react to those statements. People have the most pure intentions but sometimes it's painful, even when I know they don't want to hurt, just to help. Should I stop or apologize for sharing our struggles, worries and tears? Is my life so unimaginably awful that people can't even read about it? I mean, I am living it but they tell me they can't even hear about it? Perhaps I am too sensitive but it stings to be pitied, told that your life is so messed up and depressing that others can't handle even being in proximity to it. I didn't ask for this. I don't want this to be our story either.

In the midst of our good days post extubation a familiar threat was silently returning. After his typical three day run Finn hit a hurdle with this respiratory status. I returned on Wednesday morning to him being placed on CPAP support. As much as it pained me to see him go backward once again, I am happy to say he remained extubated for almost 6 days. Typically when Finnegan is faced with an insult he tends to crash and burn needing a hard reset to come back to baseline. This time we didn't slide all the way down the hill. 

Throughout the last few days we've tried to figure out what sent Finn backwards this time. There were small changes to his care but nothing that would warrant such a big change to his respiratory status. A little wean to his oxy, perhaps an infection but nothing really we could pin down as the reason he was asking for the increased support. Then, at shift change Dr. Schears came into our room and said "Fresh off the presses, he is showing signs of rejection again." Rejection. Again. Even with sky high tacro levels and normal labs his perfect little donor heart is being attacked by his weakened immune system. 

The question everyone wants to ask is "is this normal" and I can't help but answer that a heart transplant isn't normal. Being on ECMO isn't normal and living your life in an ICU isn't normal so how can we really say what is "normal?" Honestly, it doesn't even matter to me what is typical or atypical what matters is that he pulls through it. That he climbs this mountain and sticks his little flag in it proclaiming that he has conquered another difficult setback. The cardiologist on rounds this morning said that this doesn't mean he will have chronic rejection but it doesn't absolve him of it either. Basically, this is why we do echos three times a week and we are happy to have caught it when we did, again.

Today our intensivist wanted to take him down to the cath lab and get a better idea of his heart function and pressures. The echo pictures are helpful but a cath will give us more detailed information that can be useful for his treatment. To get his cardiac cath he was required to be intubated. Just short of his sixth day without it, Finn was gifted back his breathing tube today. What was found is that his left ventricle is quite thick. Thick from the rejection and then made even thicker by the treatment, steroids. That thickness makes it difficult for his heart to fill and pump. Because of this his lungs are getting soggy from the "traffic jam" this poor filling is causing. His oxygenated blood coming back (mixed venous gas) is at 40, where a typical person would be around 75 (disclaimer: over simplified explanation for reader's benefit).

Here's the kicker, The rejection is contributing to the LV thickness but the treatment for rejection will also cause the LV to get thicker. Yup, the treatment to fix the problem actually makes the problem worse. Awesome, huh? So, Finn will be getting large doses of milrinone to help his cavity relax, fill and pump. Hopefully his steroid treatment will work, he will be cleared from his rejection and his body can begin to normalize again. Once all of that happens, I am told in "days to weeks" we can also remove his ET tube and start back at where we were earlier this week.

In the regular world it is easy to see transplant as a "fix" but in the heart world, we know that is not the case. One of the first things that was said to me when I entered this alternate universe was "you are trading one disease for another" and nothing is more true. Today I read a story about a heart child who passed away unexpectedly. No word on whether it was related to his transplant, but one can assume. He was on his way to his first day of school like any other heart healthy kiddo. Then, suddenly he didn't feel well and collapsed. Reading these stories saddens me, especially when we are running into all of these issues. I know that every child and every heart is different but I don't want our story to end that way. Hopefully Finn is just opting to get all of his shenanigans out of the way under the watchful eye of his favorite ICU team.

Recently I've been trying to motivate Finn to get better by telling him of all the wonderful things we can do once he is feeling better. Wagon rides, swings, playing and eventually even leaving the hospital isn't that far over the horizon if he can just get past this initial recovery. As inspiring as I think my talks are, he doesn't seem to be moved to action. Perhaps a little tough love is in order. 

Dear Finn, the above is why you will be forced to spend your high school Friday nights at home watching movies and playing cribbage with your mommy. You owe me all the QT we've been missing out on for the last 5 months plus interest.

August 18th, 2017


  1. Ali, you didn't ask for this- no one ever would. But you were chosen for this, because you are strong enough to handle this even when you feel your weakest. You don't know me, we have a mutual friend who told me your story months ago because I experienced a story similar to yours with my husband. Mine is different in that it is my husband who had a massive heart attack- but he ended up in CICU for over a month experiencing multiple infections, acute renal failure which put him on constant dialysis, talk of moving him to another hospital for ECMO, aspiration pneumonia, and what seemed like a never ending battle to get him off the ventilator. So I read your blog posts and am reminded that even though we are living a normal life it wasn't that long ago that I sat in that seat you are sitting in. That it can feel like a lonely battle, but I want you to know that you are not alone. People you don't even know are reading this and praying and thinking of you, Finn, and your whole family as you go through this process. Thank you for putting your story out there for the world to know. My family wishes your little heart warrior the strength to continue his fight and know that little steps of improvement ARE steps of improvement. We also wish you, your husband and your other Lil one the strength and support you need to continue the fight right along side Finn. ❤️ Much love Erin


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