Have A Little Faith in We

Hey guys, today I am returning to a moment of our transplant journey: the pre-op room.

After the call from the OR team wondering where the heck we were, Danny and I raced through the parking deck to our car. At the time I was attempting to give directions to his parents, since they happened to be just moments away from arrival. But needless to say Dan was very frustrated with the delay and my focus on gathering family instead of just concentrating on us. That would be one of the first moments it really hit me what we were doing and importance of helping Dan  feel calm (funny yellling directions into a phone wasn’t one of the ways to do that….). So I turned off the ringer and put my phone in my bag.

We climbed into our seats, buckled up, and started to navigate out of this parking deck and into the hospital drop off. As we settled in the silence for a moment, Dan’s stream of conscious started to come out. “Are we really ready for this?…. Doesn’t it seem sorta fast?….. Are these even the right lungs for me?”  I struggled with how to answer. The truth was we didn’t have a choice. If Danny declined this pair that did not come with any special circumstances, then Hopkins’ program would question our commitment to the process. But still we are human and fight or flight is real. Should we just take a right out of the complex and drive as fast as we can out of here?? Am I the Thelma to his Louise and should just forget any attempt to talk sensibly… just encourage the crazy dream of escape? That was wrong…. but how do you tell someone “come on, Dan this is what we agreed to” like he is a child that requires the tetanus shot before playing organized sports? Thinking about the reality of what he is being asked to do: lay on a cold metal table, have his chest cut wide open, sternum broken, vital organs removed, and take on new ones in hopes they will work – was very sobering. Yea – I didn’t have much to say. But our blessing would come… during the moment I struggled with the words, Dan’s phone rings and it is our doc. The one we have spoken the most honest with, they one who has literally walked the halls with us as we debated what to do… the one who often told us the hard truths (like most marriages don’t survive)- which are hard to hear, but that means we know he is trustworthy. And he says to Danny the most perfect and honest words of this journey: “Dan, these are it- these are the right lungs…. they are yours.” And he said he would try and see us before surgery…. but no matter what, promised we would seen him the next day …. in recovery. This was happening – so we turned the car into the hospital drop off.

There are so many moments of that day I recall saying “this is what transplant day looks like” and I was sure I would remember it forever. But the truth is there are very clear memories and there are just fogs. Getting up to pre-Op was a fog. I remember pulling into the drop off spot and somehow we had ended up coordinating with my in-laws where we jumped out of the car, grabbed our bags and took off – while they parked the car. I remember us feeling a little extra scrambled as the day transitioned from normal Hopkins day to transplant day and into a part of the hospital we did not know at all. I remember little moments of relief – like when we found the right elevators. And then I remember little moments that hit me with intense emotional waves, like when we got to the right floor and suddenly time stopped. Everything slowed and we stared at the two big doors leading to the surgical wing and it felt like Dorothy standing before the doors of Oz…. this was it. After walking through those doors, Danny says “Hi, Daniel Bessette, I am here for ummmm… a double lung transplant” .  I remember the nursing staff all stopping what they are doing to excitedly help us. And I remember still trying to decide if it was a reassuring that the rest of the hospital staff seemed to have a bit of shock when helping us prepare – ok so we aren’t crazy, this is huge, even to the professionals – and also a little bit of worry, cause this isn’t normal, even to them.  That bit of time was very hazy and then we settled into the room.

We have been getting ourselves settled in hospital rooms for what seems like forever. Just like any of you who could describe the way a family member or spouse of friend matter of factly unpacks at a hotel room, or gets their breakfast together, or likes to prepare for a road trip – I can tell you step by step what my husband does when getting set up in his hospital room. For us it is so normal. This day had traces of that – Danny taking off his shoes, arranging his bag…. but then moments that it was like a person I hardly knew. He was so careful, gentle and every time the door opened his eyes seemed to get wider and wider with anticipation. Everything he did with such care – it was like he was memorizing what it was like to be alive. My mom even noticed the care with which he took off his Seahawks t-shirt (a beloved hand me down from his brother) and ever so carefully put it in his plastic bag of pre-surgery belongings. Instructing me not to lose it.

So often these hospital entries are long – blood work, IVs, paperwork, registration questions…. we pass the time by chatting or both on our phones or reading…. today all the routine things were happening yet there was distraction worthy of our attention. In the moment I would wane between treating it like a normal hospital day: being brave chatting nervously, laughing at the particular way Danny always handles his bed linens in a hospital bed. And then knowing this is completely different, so I should stop to memorize every thing. The way his hands always have this slight little curve to them – like he is ready to grab a hockey stick or catch a ball. How his eyes always look so full of life even when he is at his worst. How his curls have always had this sorta square shape atop his head (or under a ball cap), yet each singular curl is so soft and round. And how we have spent the last decade plus talking to each other without words – and today we were saying somewhere between a million things to each other and nothing at all.  Some moments I found myself seated right next to his bed, hoping I brought comfort, while other times I would pop in and out to get air, to catch my own breath. It was the strangest feeling: soak it all up because this is the moment or be completely relaxed cause I know this is not the end.

At this point in the day we had started to communicate with some folks. There were prayer requests, texts from family, we had posted to social media, and so Danny had to call his brother. He wanted to do it which of course speaks to his love for his big brother Pete, but I also think it was a huge help for Danny. He was able speak the words, get some of the emotion out, and experience the response from someone who was going to be just ask shocked as he was. The call was brief, but you could tell meaningful and with that Dan hung up and said “well, I just ruined his day”. We all laughed.

Another high point of this the day was the CF team nurse Erin who appeared. She had heard it was Danny who was up for lungs and since this call came on one his clinic days, she was concerned that maybe he was at Hopkins alone. This had started out as a normal day after all. So she let her whole day go and just came to be with him. Much to her surprise he was not alone – yes all 6 of us looked back at her when she arrived. But still she stayed and it was so helpful and more comforting than I can ever express in words, to have someone there that you could just ask questions to. Sure the other staff was always kind to answer, but they were working to get Danny ready- plus anything we asked of them, was answered within ear shot of him, who may not want to know exactly what is being mixed to go in his IV or how long his chest would be open for.  Erin – you were our angel that day. Truly, when you were in the room your bright smile and blonde hair had this radiant glow to it that gave us all something steady and calming to focus on. Thank you.

Another moment that always gives me a smile from that day was Dad being asked to help. There were times when my parents and I were out in the hall – making our calls, or comforting me so Danny didn’t have to see me worry, or giving Danny and his parents time – and so we stood in our hospital protective gear out next to the tray of supplies. Poor Dad is not a very good hospital person (I used to be just like him… ) and the sights and smells and sounds can do a number on the poor guy. But he was focused on supporting me and Danny and doing awesome. In fact faking it so well they asked him to hold a vile and needles for a second….and being the team player he is said “OK….” – luckily hesitant enough the nurse acted pretty frustrated and asked “aren’t you here to work??” But our collective emphatic “no” set her straight and actually had us all laughing a little bit ….. of all people to confuse as nursing staff- it would not be Dad!

To this day I still have no idea how much time we spent in pre-op. No idea all the tests that had been run or the information they were trying to impart on us. I know we all wandered in and out of the room. Had moments that we felt confident and good. And moments where we broke down and cried. We would take calls, share the news, and in some ways it was just like any other piece of information – “I am going to text so and so to update them” and then just like that you remembered what the update was…. what this day was. For the most part I stayed strong, smiled and only broke down once, in the hallway, hugging both my parents. But even that felt precious and just as it should be…. I had known when I made that call earlier LINK in the day, I would need them for these moments. This was truly the beginning of major turning point in Danny and my journey…. and to think it just started in this little hospital room, like so many other days… until it was time to say good bye.

Thank you so much for reading and remember to make it a great day!

Jackie