It’s Day 4.. technically going to be day 5… admitted in the hospital

Last post I said Kyla had two more LPs, but actually, Thursday, 5/21, was her last spinal tap and LP until part 2 of her treatment.

Everything was going well until the end of her LP procedure when her doctor checked her temperature and noticed it was a little elevated. They were hoping it was just because she was wrapped up in blankets…

During our parent training after her diagnosis, they had already prepared us that if Kyla spikes a fever, we will automatically be admitted to the hospital for a minimum of 2 days for observation and treatment. So the second her doctor mentioned she might have a fever, Free and I were already mentally planning our nights at the hospital.

In the PACU, the nurse said her temperature went back to normal, but then she woke up shivering. We were really hoping for the best, but once she got to clinic for her more chemo and they checked her temp again, she officially had a fever. Sigh…

Right after her infusion at clinic, we were admitted and her doctor walked us over to the hospital room.

Kyla has been neutropenic for the past few weeks. Her oncology doctor kept saying they were watching closely for fevers, so in a way, it almost felt expected that this would happen eventually.

Anytime Kyla gets a fever, they have to run several tests. First was a virus test, then blood cultures, and those results take 48 hours. The hard part is that every time she spikes another fever, the clock resets and they have to repeat blood cultures and restart another 48-hour wait.

So far.. negative on the virus tests and negative on the first blood culture. 

Her fevers have been on and off. Some days she has energy and seems more like herself, and other days she’s tired or just not acting like herself.

Today is Day 4 in the hospital. She woke up with a fever and headache, but after Tylenol she felt much better the rest of the day. We watched the live-action Little Mermaid and listened to K-pop music this afternoon. Thankfully, Kyla still has somewhat an appetite. Around dinner, Kyla was complaining about her head hurting and was shivering. She had a fever of 103. It was a little rough night but after the Tylenol kicked in she was able to do her nighttime routine with no problem. 

She does get extremely sad whenever the nurse tells her she has a fever because she immediately knows it means staying longer in the hospital.

Before we can leave, Kyla has to stay fever-free, her ANC has to be over 200, and all of her tests need to come back negative. She was supposed to start Part 2 of the consolidation phase this Thursday, 5/28, but it looks like everything is on hold until her blood counts recover.

We were told this is not uncommon during the “intense phase.” Some kids take weeks to recover, especially when their ANC stays at 0. I’ve also been reading in leukemia parent FB groups that long hospital stays during this phase happen pretty often. Hopefully Kyla’s body recovers soon and they can figure out what’s causing all these fevers.

Anyways, we are expecting to stay through next week, but hopefully we can go home sooner. Free and I already have our hospital “shift schedule,” as the nurses call it lol.

Side note, our hospital room is facing the bay but the sunset is BRUTAL. It makes the room so hot. Also, the pull out bed is uneven so it rocks every time I move. We are definitely fixing that tonight because I cannot feel like I’m on a cruise ship while trying to sleep. 😂

Anyways.. It’s 1:15am… finally I get to lay down. Tomorrow is a new day! 🧡