May 17, 2017
I have a voicemail from the hospital at 2:04 am on May 17, 2017. I’ve never been able to delete it. My phone is always on silent when I sleep. I came home from the hospital exhausted on the night of the 16th… sent my neighbor home, sent Tim a telegram message I knew he wouldn’t get since I had his phone, and crashed. At 2:30am, D woke me to nurse, I grabbed my phone and saw I had a message. Crap! I listened to it while I nursed and felt like I heard the judgment in the nurse’s voice… um, we need you to call back… um, we need your authorization… um, your husband is declining fast, why aren’t you here or answering your phone? Maybe that wasn’t there and its all in my head, but its what I hear.
I took D downstairs to call back without waking the girls. I paced the playroom. I talked to a nurse and then a nephrologist. Tim’s kidneys were shutting down. He needed to go on dialysis. A machine needed to act for his kidneys. I needed to verbally authorize the dialysis. I’m pretty sure I only really knew what dialysis was because I had recently watched a John Oliver episode on it. (Yup, I just quick googled that episode: Published on May 14, 2017.) I asked if I needed to come back…. was it ok if I came in the morning when I got the kids to school? They said that was ok.
I felt so much conviction to TRY to keep things as normal as possible for the kids. I would get A on the bus, and R and D to school…then instead of going to work I’d go to the hospital. We’d see what the day held. Maybe someone else could get Annabelle off the bus. Maybe someone else could pick up the other two from daycare…
I fell back to sleep around 2:45 and turned up the volume. At 4am my phone rang again and I jumped up like my bed was on fire. It was my friend Anne. She happened to be in MA, and the night before when I texted friends and family, she had offered to come and I said yes. Now it reminds me of the first week of freshman year of college when her mother offered to come get me from the dorms when I had mono… and I said yes.
I got up early and showered. I was so tired. But mostly, I was so scared. While blow drying my hair I texted people. My friend Jen who had put my kids to bed the night before offered to take the day off work and meet me at the hospital. My friend Christine works at the hospital, but she was off that Wednesday. I didn’t want to inconvenience Jen, but she seemed to want to do it, so I said yes.
On the drive to the hospital, a drive that would become like the back of my hand in the coming weeks, I sat at a light and texted Anne and my two other best friends from college and said at least Anne would have good weather for the drive. Shruti who was in Austin where it was raining, asked if I was being sarcastic, so I sent them this photo:
When I got to the hospital, I found my way to Tim’s room in the regular ICU area. It was around 9am. I didn’t recognize anyone so I introduced myself. They said they’d started dialysis at 6am, and they would be taking him out for a test soon, and I would need to talk to the new attending when he was available. It seemed like there was going to be time, so I picked up my pump bag, “ok, I’ll go find a place to pump, and then he’ll be back?” All of the sudden, there were a million medical professionals in his room. The new attending doctor was very talkative. He said a million words. Then the cardio-thoracic surgeon showed up and everyone made it clear I had to pay attention to him. He told me they had to put Tim on ECMO. (I had no idea what that was.) He said it would be a surgery and it would be putting him on a machine that would bypass his heart and lungs. He would be moved to the other side of the hospital for the surgery, and after he would return to the Cardiovascular ICU (ie the “CV ICU” or my”home” for the next 26 days.) He told me that there was a 10% mortality rate in just going on the machine, but basically without it he’d be dead in a couple days for sure. OMG, where do I sign? 10%? Thats nothing. When can the surgery start? After I signed the paper, the surgeon went away and the attending was talking to me again about drugs, treatments, tests they wanted, all the things they didn’t know, all the blood and blood products Tim needed…. I was at the foot of Tim’s bed, under a lot of lights, holding my pumping bag, and a ton of interns were standing there, along with nurses buzzing around… so many people and many of them were staring at me… and it was the first time in my life I thought that information was going to make me pass out. I swayed. I grabbed Tim’s bed. I asked if I could sit down.
One nurse really jumped into action. Most of the nurses seemed sort of exasperated with the attending for saying so much to me. The attending told me they all knew about us, about my family… that they all had families… then he nodded towards the interns and said “well not them, they are too young!” They all looked at me with so much compassion. It made me fell a little stupid?… uneducated?.. slow? I am used to people looking at me like that now. But I wasn’t on May 17, 2017. No one had ever looked at me the way that everyone in that room was looking at me.
I went to pump, and a nurse gave me a piece of paper and pen and I wrote down everything I could remember from that conversation. One nurse practitioner kept asking me who was coming… telling me I needed people here… telling me people needed to come. I kept saying “My friend is here… she’s just downstairs getting us coffee, its fine.” She was so incessant, that people needed to come… and what could she do for me? And it occurred to me “How do I tell his parents?” So I wrote down their numbers and asked her to call them. I had texted them both the night before. I texted them to say to expect the NP’s call… I don’t know what she said to them, but I’m not sure that did anyone any favors based on the state they were in when they called me. They were getting on airplanes.
Jen and I followed Tim’s bed to the elevator and down to the basement of the hospital and way across the hospital until they took him into the OR and I couldn’t follow anymore. It was a long journey, a lot of people had to push his bed and all his machines, make sure his huge feet didn’t hit anything. Jen was helping me be sure me and my million big bags didn’t cause any issues.
There was a ton of waiting. We waited for hours. It was awful. But then all sorts of people started showing up. I can’t even remember all who arrived that day but it was a lot. Anne arrived later after he was out of surgery. She ended up sleeping at the hospital that night after I left to go home and get the kids to bed and get some sleep. His best friend and his wife came up from Fredricksburg. My sister and her husband and 2 teenage children. My sister-in-law. My mother-in-law and father-in-law. Friends. I remember when the doctor came out to tell me about how the surgery went. Someone had just made me laugh. I jumped up to go talk to the Dr. He looked so serious. I felt judged for my laughter. My friend Christine, who works there, followed me and stood there basically holding me up and rubbing my back. He told me they were providing way above the normal standard of care. Those words “standard of care” were said a million times and I just didn’t understand. It felt like medical speak that they understand. There are words in my industry like that. And acronyms. That other people don’t understand. I recognized this as that. But I WANTED to understand. I asked Christine. And she couldn’t really translate it for me. Much later, I would understand. At the moment, I said “are they saying I’m going to have to make a decision to have them stop?” and she said no.
After that it gets blurry. Eventually I got home and my sister told me to go to bed. My sister and her husband and kids were downstairs. My 3 were asleep. I knew I needed to sleep because D would be up to nurse at some point… but when I laid down… unlike the night before.. I could not sleep. I could not even sit still. I was freaking out. I ran downstairs and asked my sister if I could take some sort of tranquilizer. She looked concerned. She didn’t let me take anything, but she came up and got in bed with me. Warmed a heat/rice thing and put it on my chest. And I did get to sleep….
May 17, 2018
This morning I was going to a conference in Arlington. I turned on Waze and started driving… and it took me the exact way I went to the hospital last year…
Then, I drove through Arlington on the way in and out… Arlington, where Tim and I had lived as friends, boyfriend/girlfriend, fiances, husband and wife, and parents for 10 years…. the memories were on every corner. I drove by his Ballston apartment, the restaurants where we went on dates in our 20s before going on dates was a big deal, the house where two of his best friends lived and we spent New Years Eve, barbeques and random drinking game nights. I drove right by the rose garden where we did Annabelle’s 6 month photos, the park where we had Rose’s 2nd birthday, 7 corners and all the stores we went to a million times… the memories almost drowned me like today’s rain. They are all good memories. I am so blessed to have so many good memories. I know that. But goodness, today, they hurt.
Tonight I had a gym class scheduled… as I was parking, the James Arthur song came on. The one I sang to him nearly every day in the hospital… until I could no longer ask him to “say you won’t let go.” The song that now makes me cry every single time I hear it. Immediately after that I heard the new Shawn Mendez song :In my blood:
I’m looking through my phone again, feeling anxious
Afraid to be alone again, I hate this
I’m trying to find a way to chill, can’t breathe, oh
Is there somebody who couldHelp me, it’s like the walls are caving in
Sometimes I feel like giving up
No medicine is strong enough
Someone help me
I’m crawling in my skin
Sometimes I feel like giving up
But I just can’t
It isn’t in my bloodIt isn’t in my blood
So the memories hit hard today. Big memories. I just wanted to write some of it down.
It’s absolutely true that sometimes I feel like giving up.
But its also true, that it isn’t in my blood.