Rejection, Infection and Clots Oh My!

Putting our lives on hold to provide for Finn's medical needs was never a question. We've been fortunate to have supportive friends and family to hold us up during this period in our lives. One of the most flexible of these being my work. They have allowed me to reduce my salary and hours as well as work remotely part time so that I can be bedside with Finn part of the week. Jeff and Asher come down for the weekend and Asher and I drive back late Sunday night. Wednesdays we swap. I return to Rochester and Jeff comes up to the cities. This way we maintain some semblance of "normal" for Asher and also keep our dog, house and jobs intact. I've taken a little bit of heat from time-to-time on maintaining my career. However, I think it's important. Finn is coming home. If I want this to be worth it and provide him with the fabulous life I have planned for him, that includes a dual income, a wonderful Montessori school, vacations, extra curricular activities and happy parents.

On Sunday night after Finn stabilized we discussed it and felt it was best for me to head back to the cities. Work would be good for me and Finn would be mostly sedated and resting. We were out of the 72 hour touch-and-go time. Asher and I said goodnight, gave Finn kisses and headed back to the cities for our normal (since May) week. When I got home and had Asher all tucked into bed I walked by Finn's room. For the first time in over three months I was able to leave his nursery door open. Usually I close it when I come home, the thought of him sleeping in his crib or rocking him and singing to him hurt too much. This time I peeked in there, took a deep breath and whispered "soon."

Monday seemed to come and go with nothing too exciting to report. Finn was resting and by all accounts appeared to be fine. Tuesday felt good. Good enough to do two things I haven't done since mid-March. Asher and I went to the grocery store to pick out fresh food and we cooked. Things I used to take for granted. Fresh fruits and vegetables and cooking for my son. Oh how I missed our family dinners. Eating healthy and being together has become a memory. It was such a priority and now it was a luxury we didn't have. My comfort in Finn getting his heart made it easier to shake out of my funk to do this for my son. We ate brussels sprouts, squash, corn and meat on the grill. It was fabulous.

Down south things weren't going as smoothly as I had thought. Finn was showing signs of deterioration. The thought was that it was in relation to his propofol drip. Apparently it can cause a toxicity that can have some rough symptoms. The team turned off his infusion and monitored him closely. It appeared to make a difference and we thought the problem had remedied. That is, until Wednesday. 

Wednesday labs looked good. Jeff sent a text telling me how great Finn was doing and talked of pulling his chest tubes. Then, at 10:30 he sent a message telling me that he went to the bathroom and came back to a scene of  six people in the room for support. Labs, cultures, upped vent settings and administering calcium. I knew immediately what that meant, it painted a scary picture. Finn's lactate jumped to 11 and there was controlled chaos trying to figure out why. For the second time since we moved to Mayo I stood up in the middle of a meeting and ran out the door.

Dr. Arteaga called me when I was on my way down. She told me not to worry (too much) but they believe rejection and/or infection were to blame. There was a third possibility, an adrenal issue, but it didn't seem like the likely case. I called my mom and had her play the Google game while I drove as safely, but quickly as I could. My heart was racing and the anxiety filled my chest cavity to the point I could barely breathe. I was yelling at cars and trucks going under the speed limit in the left lane (I do this when I am not in a hurry) and panicking the entire hour and a half. Is that my gas light on? Seriously!

By the time I got to the hospital things seemed to have calmed. It was agreed on by the CCS team that they would treat him for rejection and infection until otherwise identified. That treatment would cover any adrenal failure as well so hopefully he would recover. You could tell what a toll it took on his poor little fragile body. He looked sick. Really sick. As a mama your job is to make your baby feel better. You wrap them up in your arms and kiss their sick little head. You nurse them physically and emotionally back to health. Not in Finn's case. I can barely find skin that isn't covered by bandages or leads to touch, let alone am I able to hold him. Kissing his sweaty little head is not the comfort he requires, he needs to feel enveloped in my love. 

Thursday settled out. I was able to work remotely while Finn rested. He had been dosed with the big gun steroids and antibiotics several times and was kept extremely sedated. The care team added full support onto him and wanted to not touch anything for a few days. It was hard to see him so zonked out, but I knew it was best. I spent the day keeping an eye on him and rubbing his sweet head. He wasn't making urine and our nurses seemed off put. That night, things took a turn again. During his bath he got extremely upset. He wouldn't calm down. One of our primary nurses agreed this wasn't like him. It was as if he couldn't catch his breath. After administering more sedatives and still not getting the restfulness he required I got worried. I knew something was wrong. It's not at all like Finn to resist comfort. Usually he is easy to calm, especially by me. We both knew it and I could see the concern in her eyes as well. Finally it seemed fit to intervene. There was an order for an ultrasound too look at the kidneys to see how they were doing. They were also forced to give him a paralytic to calm him. Tests were drawn. The results being that he needed a PD catheter inserted into his abdomen to drain fluids and additional bicarbonate. His body was not able to make urine and trying desperately to breathe off acid in his blood to no avail. Giving him back the bicarb and the fluid drain combined with a paralytic was the best bet to get him back to baseline.

It was late. I couldn't maintain any longer. My brain, my emotions, my heart were giving out. I pulled the cot out and fell asleep. At least, I think I did. I woke a few times to different activities in the room. A new arterial line being placed, doctor/NP check ins and meds being switched up. In the morning I was barely able to move or listen to the nurses hand off. I was tired, yes, but mostly I was emotionally distraught. The message was clear the night prior, Finn wasn't doing well. This isn't typical of someone recovering from a heart transplant. The intensivist said point blank "Is he dying, well, no. Am I worried about him, yes, very." I couldn't process it. How could we have made it this far and have him not make it to the finish line? ECMO, transferring to Mayo, waiting nearly three months, finally getting a perfect donor heart, cardiac arrest and then he is just going to die? What will I tell Asher? Am I supposed to just be "normal" after all of this? Will I watch him suffer? Did we betray the donor's family by taking this gift when we couldn't give it the opportunity to do what they had hoped for their child's memory? My whole body hurt. I couldn't eat, drink or even move. I just laid there and cried. I cried and cried. For the life I wanted, for the life I thought I was getting back and for the life of my sons. 

A fellow heart mom who I had barely met over the internet, let alone in person, stopped by with a bag of food and beverages. Finn's neighbor Ethan's mom brought me water and a snack. I couldn't even make words to thank them. Dr. Arteaga came in the room to convince me to shower, sleep and eat something. She told me a story about a child that should have never walked out the doors of the ICU and did. How they weren't giving up on Finn and hope that he will do the same. After telling me that he chose me to be his mama and convincing me that I needed to rest, eat and shower to be a good one I finally went back to the RMH to compose myself. Finn wasn't going anywhere and we had done what we could for the time being. He just needed more rest and I needed to get my shit together.

Friday afternoon and into the night Finn remained stable. He had a good and restful evening and Saturday at rounds words like "good, better and favorable" were being used to describe him. What a change. How can he be so sick one day and then be so "okay" the next? The theory was rejection combined with potential infection in his lungs. The increased steroids and antibiotics since Wednesday seemed to be doing their job and we could confidently say he was doing better. His kidneys took a kick and they were slowly showing some improvement. To call this a roller coaster doesn't seem to do it justice. How I can go from thinking my son is dying (again) to on the road to recovery is a mind game I don't wish on any sane person.

Saturday we had a "good" and boring day and a decently restful night. Today, Sunday, we got our kidneys back! As of me writing this his afternoon labs came back at near baseline. Enough with the Murphy's Law already. Can we start with the forward motion yet? Ten days post transplant and our best news is an organ that never failed before recovering from acute injury due to the transplant.

Tomorrow I go back to work to continue building that wonderful life I want to give you. No shenanigans this week Finnegan. Time to take some Finn steps forward my darling. I can't wait to kiss your sweet head again on Wednesday and see the progress you've made with your daddy at your side.

July 23rd, 2017