Tuesday, January 22, 2013

Leukemia - How is Jemma? - Day 218

We're back in the hospital, but everything is alright. Most children going through Leukemia treatment develop a fever which requires hospitalization at the end of Phase 2A.

After I left you all hanging and worried on Thursday night my husband and I spent two sleepless nights monitoring Jemma's temperature. Her fever was below 101.3 and so she wasn't required to receive antibiotics and be hospitalized, however it was around 100 degrees F which was significantly higher than normal. Since she had a very low immune system we knew that if she did get sick it would happen extremely quickly. I tried to sleep first while my husband took Jemma's temperature every 20-30 minutes, and then he tried to sleep while I monitored Jemma. This went on for 36 hours - very stressful.

On Saturday her temperature was still around 100 degrees F, she still told me she felt fine, and her breathing was still normal. However, she was a little cold and sleeping more than the prior two days. We went to the hospital for a blood check and were admitted.

Her immune system went from low on Thursday to zero on Saturday, her fever was mild, and the infection level in her blood was slightly elevated. Rather than wait a few hours until the infection took over, she was admitted and given antibiotics via the iv. In addition, she received another dose of the medication she received on Thursday to combat blood coagulation problems and prevent thrombosis.

On Saturday when we came to the hospital my eleven year old was away at a dance competition, my husband was working and my son was home. He spent about seven hours with us at the hospital. Surprisingly, in the seven months since Jemma has had Leukemia, this was the first time he had to come, and the first time he really got to see what goes on here.

Although he was ready to leave after the first hour, being here benefited him greatly. He saw the doctor's take blood from Jemma's catheter and shoot it into bottles to test for infection, before learning about hospital food and how to play the card game Gin. He took over my computer to build a house using Google Sketch-Up, and when all that fun ran out he learned how to work Jemma's bed. Seven hours was plenty for him, but I'm glad he was able to come with us. I knew it would happen sooner or later.

Now that's she's been on antibiotics for a while her fever is back to normal. Since we came at the very beginning of her infection she recovered quickly. She seemed quite normal even on Saturday.

Perhaps the best news of all is that her steroids are wearing off a little more each day. She actually tried her dance today. She hasn't done this for about six weeks and it was a little too soon. She fell down while dancing and had to stop. Her legs are physically not ready to dance. Her strength has deteriorated since her nerves were so effected by the medications. Although it was sad watching her fall, I was elated that she tried.

Another sign of the steroids wearing off is Jemma's smile. We saw it yesterday. It's truly been a long time since we have seen this side of Jemma's personality. She was showing one of her favorite nurses how Hedgie looks with a pushed in nose. (All of her favorite nurses are male by the way.)

I'm not sure when we will get to go home.  That all depends on how long the infection level in her blood takes to decrease, but that typically takes between three to five days.

Sorry this post is a bit late. I managed to use all my internet megabytes today and had to wait until midnight to post when my account was reset.

4 comments:

  1. So nice to see Jemma's smile back again! Rough couple of days for you but glad things are back on track.

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  2. So glad to see her smile too. I keep checking up on your posts and reporting them back to Rob. He says, Hi.

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  3. Fills my heart with joy to hear this! We also love UNO, btw. LOL.

    A big hug to you, Jemma. We love your smile too.

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  4. Thank you all - Today as we were leaving the hospital we saw a little girl who finished her Leukemia treatment in November. Tomorrow she will have her catheter taken out. It was wonderful to see her because she looked so good. She didn't have much hair, but she was no longer bloated, her eyes were bright, and she looked like she was happy and full of energy.

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