Roller Coasters

While on our Florida trip, we went to Universal Studios where Eli rode his first roller coaster. He was reluctant to ride it because he said he was afraid of heights. He rode it anyway and had an exhilarating experience. Hagrid’s involved a lot of steep ups and downs, sudden curves, stops and drops, and, when you thought you were at the end of the track, going backwards. That’s a little how it’s felt since my last post.

After being assessed in the emergency department, Eli was admitted to the hospital for continued monitoring, antibiotic administration, and diagnosing of the underlying cause of his neutropenic fever. While most kids in his situation don’t end up having a worrisome cause, about 10% have a life threatening bacteria, which is why they are very cautious in these circumstances (low white blood cells, zero absolute neutraphil count). The reason his counts are low is because of the chemo. He was actually very fortunate during frontline treatment to have avoided inpatient stays for febrile neutropenia.

We spent the first day of this hospital stay waiting for test results. Even though Eli had a negative Covid test last week, they did another one. Pending the outcome of this test we are quarantined in the room. They, by default, wouldn’t even let his dad come for a visit, but I was persistent and got permission (I admit that Eli and I had begun to plan a jail break in case my efforts to get permission failed). When they said they would be testing Eli for Covid-19, I asked about testing for the other viruses, many of which are known to have more potential harm to his age group than Covid, so they did a viral panel, too. Since Eli’s other two fevers in the last two years were caused by viruses, this would be a best case scenario, allowing Eli to go home and recover there. The panel came back negative, but we’re still waiting on the Covid test, which is expected to be negative.

Eli really doesn’t like to sleep with his port accessed, nor stay overnight at the hospital, so the emotions he’s had have been part of our roller coaster ride. His mouth sores, caused by the chemo, have affected his appetite and ability to eat. The last day has seen more tears than most of the last two years.

It hasn’t been all bad. We spent time playing Phase 10 with Megan, the child life specialist who plays Blokus with Eli in the clinic.

Early in the afternoon, Eli’s temperature was back to normal and he employed his mad negotiating skills to convince the doctors to let him leave last night (they usually require 24 hours of normal temperature before discharging from the hospital). We were all packed up and ready to leave at 8pm when a final temperature check revealed the fever was back.

That is when I insisted Eli’s dad be allowed to visit.

So, here I am now, finishing a blog post at 5am, in the hospital, not sure when we will get to go home. We did a few things to make it easier for Eli to get the sleep he hadn’t got the night before, which was his main complaint. By the time we went to sleep, he was calm and optimistic. Other than his fever, he has been tired, and lacks an appetite because of the mouth sores.

I’m not really worried that there is some deadly bacteria lurking in his body, but am fine with staying here as a precaution. With a second night of this inpatient stay, it is now Eli’s second longest time spent in the hospital (the longest one was when he was first diagnosed with cancer). It is odd to me that this kind of thing feels rather routine to me now.

2 thoughts on “Roller Coasters

  1. lloyd and Rochelle augustine

    Thanks so much, Elaine, for the updates! Our thoughts and prayers are with you, Eli, Adam and the rest of the family! You ALL are troopers!!!!

    Love you ALL,

    Mom/Gm A


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