Day 5 at St. Jude

I am wiped from an emotional day… plus back home it’s 11:30pm EST.

The morphine pump through the night lessened her pain, but she was still having shooting pains in her right leg.

From Wikiepdia:

At 7:45am our nurse took us down to the Interventionist Radiology to place Jesse nephrostomy tubes. We really have no choice because the tumor is squeezing both ureters.

The anesthesiologist was very concerned about operating on her because she was running a fever of 102.3F. After talking with her oncologist, they decided to do it. But they did it with an tube down her throat.

After 9:30, the nurse called and said she was in recovery. I went to wait by the door while Mom made some calls about how she is going to get home. I have decided to keep my car here with me, since on Sunday they are making us move from the Grizzlies House to Ronald McDonald. I will have to go for orientation on Sunday morning… 45 minutes. It actually irks me a bit. Why do we have to do this right now when I have a sick child in the hospital?

But Mom will stay with her while I go deal with that.

At a little after 10, I heard her yell “Mom” through the door of the recovery room. After that we were allowed back in.

By 10:30am CT, we were back in our room and they gave her the 30 minutes of cyclophosromide and 30 minutes of topetecan.

While Mom was out of the room, Jesse looked at me and said she was hopeless. I have no idea where she got that from. I told her she wasn’t and to keep fighting we have camping to do this summer and especially in October.

Around lunch time a psychologist arrived to talk about Jesse. I have been concerned about her getting depressed and what would be the best way to help her. After talking with her, a nurse arrived to touch base about when Jesse was discharged.

Then our child life person found me. She allowed me to go upstairs and pick out items that equaled 10 stars for Jesse to receive from Santa. I was amazed at the choices… there are many generous people in the world.

This afternoon Jesse began to cough. Each cough lead to a scream because it hurt where the tubes have been placed. The doctors have upped her morphine to deal with the pain. And she asked her nurse to place pillows under her arms.

She did eat about 3/4 of a slice of pizza for lunch. Then for dinner she ate two bites of salad. She has drank more than she has eaten.

Also in the afternoon, she complained of the rash on her left belly itching. The nurses got some cream for it. We are thinking that this rash might be from the cloroprep. Then it was on her arm and shoulder on the left side. The nurse gave her Benedryl. It didn’t knock her out. In fact she just fell asleep. She has been fighting it for 30 minutes. And when she did go, she nodded her head 3 times. I couldn’t get her to explain why.

She also ran a fever this afternoon leading to the nurse culturing the caps again. Her culture from 2 days ago is coming back clean so far.

The morphine has also made her more itchy. She is having a hard time reaching her toes on her right foot, which seemed to itch more than other areas. I noticed that her leg at the thigh looks larger and her area looks larger on that right side. In fact she discovered that tonight.

She has not asked to go to the bathroom at all with these tubes. I am a little concerned about that. We did get her up to weigh her. With almost full bags she weighed 18.8. Took her off scale emptied them, and she weighed 19.3kg. This didn’t seem right to me at all, but the clinician weighing her didn’t seem interested in weighing her again. I did bring the concern up with the nurse. We were able to get her up again, and this time we didn’t let her hold onto the scale: 18.1kg. She was very shaky while having to stand up… and while waiting on the clinician to get someone to empty her bags, she had to stand for 5 minutes.

I had a really hard time trying to hold it together while they took her back for the nephrostomy surgery. And I am having a hard time with seeing how swollen her leg and groin are becoming. I really don’t want to lose her, but I don’t have the sense of calm and peace I had the first time we went through this. I am praying for a miracle.

Jesse did actually speak to Mike and Christine tonight. This is the first time in a week that she has talked to them. She has been refusing.

Mike did tell me about all the get well cards from her school: Norge Elementary. I am really grateful for those cards, and Jesse loved hearing them read to her over facetime. And thank you for the money to help cover Mike and Chris’ plane tickets. Thank you also to Mike’s coworkers for your kindness and assistance.

Later tonight we spoke briefly with her camping buddies. I am not sure if it helped or hurt. I know it hurt me to see my home and know that I was not right down the road to go back to it.

Man how I wish we were home… how I wish Jesse was as healthy as Chris and how I am thankful that Chris is healthy.