Jesse 6/28/2011
I didn’t sleep Sunday night into Monday night because I was petrified of what could happen. It’s hard not to be when a common side effect of the antibody is severe allergic reaction topped with not knowing how this will make her feel.
Monday we arrived at clinic by 7:30am. I stopped at McDonald’s and got her a chicken biscuit because I was concerned this would be the last time she felt like really eating.
In the PICU, they gave me their list of rules. I am not allowed to eat or drink in here because of OSHA standards. On a level I can understand the food issue especially making patients who can’t eat smell food is cruel.
At 11:45am, the nurse gave Jesse her GMCSF shot to rev up her immune system so the antibody will work better.
They also began her on continuous morphine. The antibody will cause nerve pain, and they found it’s better to start with morphine than to play catch up. The nurses also gave her Benedryl, Tylenol, and neurontin ( a drug to reduce nerve anxiety)
At 12:45pm, the antibody infusion started.
By this time the morphine has her very relaxed, and she went to sleep.
Around 3:00pm, she yelled “I’m going to throw up!” I didn’t make it in time to catch it.
After we cleaned her up, I went up to 8b to do laundry. And Jesse went back to sleep.
It was so good to see everyone. I wish we could have stayed up there… But I understand they need the respiratory doctors and one-on-one nurse for Jesse during this procedure in case her body rejects the antibody.
At 6:30pm, they made me leave. Luckily Jesse was asleep and didn’t know I was gone for the hour. I had to leave while they did shift change for other patients’ privacy.
When I returned, Jesse’s night nurse was examining her. She told me that days 3 and 4 are going to be worse and I’ll just have to power through. ( that was actually the first thing she said to me… Power through as if I haven’t already).
Turns out that she once worked in DC giving antibody and doing bone marrow transplants, but left to be a civilian nurse with the army in South America.
Around 9pm, she threw up again, and we gave her phenegren.
Around 10 pm, we had no choice but to catheter Jesse. Before the catheter was even in she peed.
At 10:30pm, she developed a rash on her face and head, but luckily no where else. Within 10 minutes it was gone, but we gave her Benedryl anyway to prevent another reaction.
Around 11pm, the antibody was complete. The nurse told me she would turn off the morphine an hour later.
I passed out sometime afterwords, only to awake to Jesse screaming.
The nurses were trying to insert another catheter because they needed a urine sample. Jesse clamped down so hard she caused the tube to bend and push back out. With all the yelling, her bladder released and she peed in her open diaper before they could insert the catheter.
She slept till 6:30am. And luckily this time they didn’t kick me out! Since we have a glassed in room, I don’t have to leave for shift change, but I can’t leave the room.
Jesse and I painted, called her dad, ate a bite of muffin until she went to sleep at 8:30am.
At 11am, the nurse gave her her GMCSF shot. I tired to wake Jesse, but she wouldn’t budge. And didn’t budge when the shot was administered.
When she woke up around 11:20am, she saw the nurse prepping the Benedryl. Thinking it was her shot, she screamed. I told her she’d already missed that.
She played and drank 3 pedisures falling asleep around 2:30pm. So far her vitals are looking okay. Her heart rate is up, but that might be IV fluid related.
Praying for no fever or pain (luckily none yet) and that we can stay at the 10 hour infusion rate versus the 20 hour infusion rate.