Helicopter to Room 13

Yesterday, or rather this morning, around 2:45 am, two paramedics and a pilot loaded Roy onto a gurney, wheeled him out to the helipad, and took off into the sky to bring Roy up to Fort Worth to the Baylor Scott & White All Saints Medical Center. He had been accepted as a patient and a room (#13) was available in the Intensive Care Unit for him. I am curious to see if he will remember that flight or not once he feels better.

That’s how our twelve plus hours in room 19 of the Emergency Department concluded. During that time, Roy had blood drawn multiple times, a chest X-ray, a diagnostic paracentesis (a mini-version just enough to fill a syringe to test the fluid), and CT scans. Mostly though, he dozed and they monitored his vitals. The first ER doctor said his sodium was low (124) and his ammonia was high – but they didn’t tell me how high. Fairly early, the second ER doctor told us he needed to go to a higher-level facility and that they would confer with Methodist; Methodist told them he had to go to a Liver Transplant Center and that they did not have space. We never really were told what was wrong, or how severe it was, until the early hours of the morning.

The third ER doctor who came by during the midnight hours showed me the labs, and talked about how HCC takes the biology we know and throws it out the window. He said there was something on Roy’s lung on the x-ray but they couldn’t tell what. And essentially he reiterated that Roy is complicated: alpha-1 impacts lungs as well as livers, he has cirrhosis with a loss of a lobe along the way, as well as a penicillin allergy. The HCC and recently accelerating decomposition of his liver function with the ascites, the kidney injury, the edema and the hepatic encephalopathy, made him more complicated than the local hospital or even the main one in Temple could handle. He calculated Roy’s MELD as 20-28 based on the labs taken.

Roy rated a helicopter ride because of the ammonia level and a shift in his cognition last night. When we arrived at the ED, he was slower in responding (like any exhausted or weak person) but oriented. He was able to identify himself, his location, the time and day, etc. After being there for hours, Roy began to drift into a milder version of Not-Roy. He suddenly wanted to have his shoes on but couldn’t tell me why. He wanted his hair brushed. He decided he was in Fort Stockton, that my name was something Kimberly, and that his name was Houston Texas. Meanwhile his heart rate was making a highly variable graph as it beat – it charts with inconsistent peaks, occasional bumpy or wide dips, and a few rumble strips; they say it’s “v-tach” and “bijiminy” or “trijiminy,” or something like that (do not trust my spelling.) His blood pressure was riding that wave of ups and downs. He began complaining of itching so I knew his bilirubin was up. And he repeated over-and-over, I’m okay, it’s okay, I’m okay. He hadn’t eaten all day really; he ate about 7 potato chips from my supper. Turns out his ammonia had reached 191. That’s why he got the helicopter.

So it should not be a surprise that he is not really himself today. He’s not Not-Roy. He’s a muted version of himself. He recognizes me and the nurse reported he knew his birthday was in September but not the year. He has asked when he can go home, he wants to get out of bed (he cannot he is too weak), and he had a very hard time complying with the instructions for the echocardiogram – take a deep breath and hold it turned into a series of deep breaths, for example. He is complaining that he hurts all over – and he probably does. His body is very swollen and his skin is tender. He has a lot of new bruises from yesterday – almost every time they took blood, the veins blew. Today has been centered on getting him to eat – he did have a peanut butter and jelly sandwich and two pieces of green beans so far. There was a tray waiting when I left. The nurse said they are treating for infection, his platelets were at 33 this morning, and they are giving him albumin and lots of lactulose.

I was so glad to see him but also sad to see him feeling so poorly and not being able to have a real conversation. There’s a weird place in this illness shaped by love – there’s a mourning of the loss of the person that you knew at the same time there’s hoping for healing and restoration.

He is not the mean or obstinate Not-Roy of the last HE experience. He’s quiet, and gentle, pausing before almost any response, and repetitive in his requests. If they can’t be granted, most of them can be gently denied with a redirection – we can’t go home yet, you need to be still a bit longer, you’re doing a good job, we are going to help you, and so on. And otherwise, he mostly wants to sleep. He’s so worn out.

I am a bit of a mess from moment to moment. Last night was super scary. I wasn’t sure I would see him again when that helicopter took off. And I freaked the cats out when I finally went home and started packing for him and for myself, and making sure I had documents on hand, etc. in the middle of the night. I slept about two and a half hours before driving up here. I am able to be kind and gentle and upbeat for him, but I am simultaneously worrying – what if he doesn’t snap back to himself? What are they really going to be able to do here? Where is this going? I am afraid that I messed up something in his care to make this happen. One doctor told me he has a UTI which probably triggered the whole thing so maybe I should not have accepted “that’s normal” and “do not worry about that” answers about that catheter. It’s really easy to second-guess things when you are tired and mostly in your own head. I am simultaneously extremely grateful to my newly activated support team; they’ve given me strength to be able to keep the tears at bay (mostly but not entirely) and I am learning that there are people who have my back. I am trying to trust that I will be able to handle whatever comes next – there will be enough, that being here in Fort Worth will help him, that we will still find joy in the small things, and see more good come from the experience.

I got myself some supper and am going to get some sleep so that I can be there early enough for rounds tomorrow. Maybe I can get more information and a better sense of the goals and activities surrounding his care.