Day 17 at St Jude

This morning I woke up to learn that Jesse has an infection in her CVL. First one of those I can remember us ever having, even with the last CVL. The stain right now is graham negative; meaning that it is not staph or strep. And until tomorrow, we don’t really know what it is. While we wait, the doctors have removed sephlafin (sp?) and added 2 more antibiotics.

The resident came in before 9am… I returned from getting some breakfast to find her in the room. One day I’ll beat her in being in the room.She talked about Jesse’s pain level. And instead of listening to me, she just wants to up the dose of morphine. I don’t think upping the dose is the answer. I think that Jesse’s body has gotten used to this dose, but I don’t want to snow her. If she wants to be awake, I want her awake.

I noticed that Jesse started shivering right after the resident left. I asked for her temperature to be taken: 98.2. But I had a feeling that it was going up, and by the end of an hour: 102.6.

The nurse came with Jesse’s medicines. She asked me if anyone told me about Jesse’s ultrasound, which they hadn’t. Luckily the ultrasound showed no clots. She also told me that Jesse’s platelets are around 40, which is considered low. Her hemoglobin is 9.7, and her ANC is 0.

The attending doctor and fellow came in to see her. He mentioned the added antibiotics and that they wanted an xray to make sure something else wasn’t going on.

She wanted to go see if the gift shop was open. Since we didn’t have a wheelchair, Jesse had to walk from her room to the elevator. And when we found the shop was closed, she had to walk back. Jesse mentioned that her leg hurt. When we returned to the room, she asked for an ice pack for her leg. On her walk back we waved at the attending and fellow, who were suiting up to see other patients.

The platelets were ready to be transfused when we returned. Jesse played a game while waiting for them to complete. She also asked about her GM-CSF shot. We asked her if she wanted it with LMX, the J-tip, or straight. Jesse opted for straight. I don’t think the J-tip and LMX really work for her. Plus she kept saying she’d rather get it over with. She did scream with the shot, but once again recovered quickly to put the band-aid on.

The new infectious disease team came by after lunch. They talked about several things:

The new antibiotics Jesse will be taking
Asked when her latest MRI was. They want to look at it to see what they think. They did think Jesse didn’t need an xray.
Discussed what type of bacteria this might be. It could be bacteria from her gut that grew more with the suppression of other bacteria due to the antibiotics. It could be a type of bacteria that likes to grow in the line. This type is hard to get out of the line. And this might mean a removal of the CVL.
Getting a new blood test using a line in her arm or hand to see if the infection is in the blood or in just her CVL. If it just in her CVL, her chances of having the CVL removed are increased. They have found that bacteria is very determined to stay in the CVL with little effect on it from antibiotics.
Possible entry into a double blind randomized study for using ethanol (alcohol) in her line. They have found that when alcohol is dropped into a petri dish, it kills the bacteria. It is at times more effect than the antibiotic at breaking up the bacteria that wants to live in the CVL. It will only be enough alcohol to stay in her CVL. If it does get pushed into her body, it’s not enough to make her drunk.
Trying to determine if she will have 6 months of antibiotics versus 6 weeks of.
And because of the infection, new fevers, and lack of ANC – the operating doctor isn’t comfortable putting in stents… Not sure if the stents will be placed next week or when her ANC returns, which could be another week or 2 from here.

After they left, the nurse and I loaded Jesse into the wheelchair to head to xray. After a quick two pictures, we headed back for Jesse to check out the jukebox on the covered porch.

We returned to the room when Jesse’s leg started hurting more. The nurse and I talked about the resident ordering Jesse morphine every 3 hours versus 4 hours. She had tried to tell them in rounds this morning that Jesse needed to try another pain medicine. We both think that upping the morphine will just snow her, not really help her.

This afternoon the nurse told me she has gotten them to agree to let her try oxycodone. And unfortunately they had ordered the blood draw from her arm too. We told Jesse, who was far from pleased about it. She accused us of not telling her, but we told her as soon as we found out it was going to happen.

Getting the blood from Jesse’s arm wasn’t easy. She became very upset, and the more upset she got, the more her veins hid. We tried her hand first with no luck. The nurse was successful in getting it from her arm. They felt awful they had to stick her again, and I am sure Jesse screaming “Mommy save me” as I held her in my lap didn’t help.

Now Jesse is up coloring. She is complaining that her thumb hurts on the inside. Not sure if that is pain related to her GM-CSF or from the attempted blood draw. Her wounds on her back do look better. One of the dressings came off. Instead of bugging the nurse, I replaced it the way they had shown me.

Jesse has also been pulling out her hair. What she isn’t pulling out, is falling out. I will give her credit. Even with all the medicine and upset of the day, she is wide awake. And not showing any signs of slowing down.