Thread by @clim_dynamicist, My mother died of COVID-19 one month ago. I am going to [...]

My mother died of COVID-19 one month ago.

I am going to share the story of her illness in the hope that it helps someone. She was a doctor and always wanted to help people. If this informs anyone else’s behavior or care, maybe she still can. Please RT. 1/n

She got it in the waiting room at a doctor& #39;s office. Everyone wore masks, but it was a small indoor space and while masks help, limiting time in the same space with others is the best way to not get COVID. 2/n

Why they had people waiting in the waiting room for an hour is unknown. I assume if she’d known how long the wait was going to be, she’d have waited in the car. 3/n

She got very sick very quickly. Her symptoms started 4 days after exposure and her fever was over 102.5 with Tylenol. She had debilitating scalp pain, a sore throat and a cough. 4/n

A week after exposure she had a positive test at her PCP’s office. Fever had gotten worse, cough was better, and she wasn’t eating much. The doctor sent her home, and she got a pulse oximeter to watch her oxygen levels. 5/n

Two days later she was admitted to the hospital. Her oxygen levels would desaturate just from sitting up in bed. She couldn’t keep anything down from nausea. When she was admitted her electrolytes were super messed up and she was dehydrated. 6/n

They got her oxygen up without too much trouble. Her lungs weren’t “stiff”, and she had widespread but “mild” damage. She got remdesivir right away. Also dexamethasone. She also got convalescent plasma after about 24 hours. 7/n

Her fever went down after remdesivir, but keeping her oxygen up was a struggle. Scalp pain had resolved, but then they tried prone positioning and it came back. (A vertebrae issue is why she had the scalp pain in the past.) Nothing worked for her pain. 8/n

Four days after being admitted, they intubated her to get her oxygen up. She was on the ventilator for 13 days. It was a rollercoaster. Her lung function got much better, then it got a bit worse again, then she got a fever and her oxygenation got much worse. 9/n

No cultures grew anything to indicate a secondary infection, but they treated her for one anyway because that’s what you do when the fever spikes that high. Her temperature went down and she was mostly stable for a bit. 10/n

Then her kidneys stopped working, and they had to start her on dialysis. Just before they started the dialysis, her fever came back a bit, so they started her on a different antibiotic, Xyvox. 11/n

Getting the dialysis set up was a nightmare of a day and she had to be heavily sedated and proned to keep her oxygen up. She was on a very slow dialysis because of her (extremely) labile hypertension. We waited to see if it worked. 12/n

It seemed to be working. Her oxygenation got better and they flipped her to her back after a bit over a day. But then her blood pH was low. They adjusted the ventilator settings and it helped a bit. She was doing more of the breathing herself. Her oxygen was getting better. 13/n

But later that day her lactic acid jumped from 1 to 14—that was interpreted as her losing her bowels. We got the call to go say goodbye. I had driven in from Massachusetts mid-week, so I could be there. 14/n

When we got to the hospital, it didn’t seem like she’d lost another major organ. Her oxygenation was fine, her blood pressure was normal. We were ready to grieve, but the nurses weren’t ready to give up hope yet.
She was on a continuous basic drip to bring up her blood pH. 15/n

My dad had gotten COVID from her and had been released from the hospital with two negative tests and a positive antibody test.

It took a lot of convincing, but they let him be in the room with her. That was so special.

This should become standard procedure!
16/n

Seriously, if there is one thing we take from my mother& #39;s experience, let it be this:

If there& #39;s a family member who is COVID negative, antibody positive, let them visit their loved one in the ICU.

17/n

Dad brought in his phone and he video called with friends and family so they could all say goodbye. I sat outside the room and sung to her through the baby monitor they had set up. That time was very important for us. 18/n

We were there for a while. Her evening pH test came back at 6.85. That’s really low. But her glucose was also very low. That’s not consistent with infarcted bowels…. These contradictory signals were confusing. People have survived with low pH before. 19/n

Maybe she had lost a large muscle instead. That would flood the blood with lactic acid, but it wouldn’t be the death sentence of losing her bowels. I talked to my friend who is an intern and she told me that Xyvox can cause a potentially fatal side effect of lactic acidosis. 20/n

I called at 2:40 AM to tell the nurse to stop the Xyvox. They were just going to call me. They couldn’t keep her blood pressure up. 21/n

We drove back to the hospital to actually say goodbye this time. I joked that with her labile hypertension we just needed to go take turns making her angry and we could keep her blood pressure up no problem. When we got there it was too low. 22/n

Dad got to be there with her for her last few minutes. That was precious. The nurse made it extremely peaceful. I cannot say how important this was, that they allowed him to be there (with his positive antibody test from earlier that week). I looked in from the outside. 23/n

They still aren’t sure why they lost her. Her lungs were healing. The dialysis was working. She still could have lost her bowels, but the low glucose reading is ?? It could well be the side effect of Xyvox and if they’d stopped it at the first hint her pH was low…? 24/n

I’m not saying that she didn’t get the best care she could have. She got remdesivir <5 and plasma <6 days after symptoms and she didn’t have bad lung damage. They thought they should have been able to save her. But maybe this case study will help save someone else. 25/end

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