The last few days quickly went downhill. She woke up every night at 3am wanting food. She usually requested a Peanut Butter and Jelly sandwich 🙂 During the day she was starving and wanted chips and salsa and milk all day long. Haha. I only let her have one snack of it a day because I knew she was at risk for mouth sores, well low and behold on Tuesday (Day 22) she cried and cried of her mouth hurting. I looked and she had a canker developing on her lower lip 😦
She had grown in a nice fuzzy poof of hair all over her head. On Saturday I said to my mom, “I’m so surprised Liv hasn’t lost her hair again! They said she would lose it again this round, but I haven’t seen any signs of it falling out yet.” The next morning (Day 20), I rubbed Liv’s head and a bunch of little hairs came off on my hand. I did the lint roller and it quickly filled up as well. Papou came over the next day and left with hair all over his black shirt 🙂 Luckily Liv doesn’t get sad about not having hair. She usually giggles about it when it’s falling out and always just talks about it very matter of factly. (“My hair will fall out one more time and then it will grow back.”)
On Monday Liv was extra tired and was having a lot of back pain. She cried about it for a while. I checked her temperature and she didn’t have a fever. I decided to wait one more hour to see if the pain subsided and to make sure she wasn’t getting a fever. She still had pain an hr later and no fever so I gave her some Tylenol. Her brothers and sister were playing in the basement and she really wanted to be down there but didn’t have the energy to even sit up. Daci made her a bed out of big pillows and brought her blankets and stuffed animals. She also made a little table next to her so she could do art too. Street saw Daci doing this and ran to get Liv a book. It melted my heart to see her siblings take such good care of her. So sweet!
The next day she had even less energy 😦 She cried of her mouth sore and leg pain for a lot of the day. Around 3pm she was exhausted. She followed the kids downstairs to the basement again. I went to check on them a few mins later and she was fast asleep on that pillow bed that Daci had made her the day before. She slept there in the middle of their noisy playing for an hour!
When she woke up she was in even more pain. She cried and cried over her legs and mouth. I checked her temp and it was at 99.5. She generally is around 97.8 so I knew it was up a little. I couldn’t give her Tylenol because it would mask a fever if she was getting one and that is dangerous so I gave her oxycodon instead. Daci tucked her in bed and read a story to her. She had made a cute sisters sign for her earlier that day and hung it on her wall. So sweet 🙂 Within 30 mins of getting her meds she happily exclaimed, “Mom, my legs and mouth don’t hurt anymore!” She went to bed that night and got up at 3am for her PB&J 🙂
The next morning she seemed good but by 9am I could tell she was getting warm. I checked her and she was at 99.1. A half hr later she was at 99.5. At 10am she was at 100. If she gets to 100.4 and stays there for an hr she has to go to the hospital, or a single reading of 101. I called Rick and told him I thought we would have to go in so he headed home from work. My mother in law came over to sit with the kids. By 10:30 we were getting 100.6 so I called the hospital and they wanted us to come right in. When we got to the hospital she was at 101.7 and they admitted us. They drew her labs and got her started on fluids, Tylenol and antibiotics through her port. We had to wait for a while until a room in the inpatient untI was available. They brought her toys to play with but she just had no energy 😦 Her eyes were rolling in the back of her head and she was fighting to stay awake. I went and got a pillow for her and had her lay down in the chair. She was out within a minute. Poor baby 😦
The nights are always tough in the hospital. She has to get her vitals checked every four hours and she has to pee like every hour and a half to two hours because she’s got fluids pumping through her. There is only a small bench in our room that sleeps one person. Rick decided to stay last night so we squished on the bench, like we did the first night back when she was diagnosed in March. I think we forgot how terrible it was. Never again! It’s seriously the worst. Haha. I don’t think we got any sleep. Plus then she woke up at 4am starving (still steroid side effects), so we got her a banana, cereal and yogurt. I am pooped today! Liv doesn’t seem too tired though. She wants to play games and do crafts all day 🙂
Her fever spiked to 100.7 last night at 2am and then by 4am was down to 99.5. She has stayed at about 99.2 all day so that’s good! Her bacterial cultures after 24 hrs are negative. This is good because she has no ANC (neutrophil count) and this is what fights bacteria. So It’s looking like what is causing her fever is most likely viral. They need to keep her for 48 hrs though because some bacteria grow slower and could grow by 48 hrs. They like to have no fever (nothing over 100.4) for 24 hrs before they’re comfortable with sending her home. We are keeping our fingers crossed that she can stay down the rest do today and tonight so that she can be on the mend and we can head home soon!