Journal entry by Kelsey Olson —
No news was good news! We stayed out of the hospital for a record amount of time - 4 months! Cam even had two minor colds & we were able to manage things at home, which is a first for us. I didn’t want to post anything, fearing I would jinx his good luck.
2 days ago Cam started to have increased work of breathing & yesterday he unfortunately needed to be admitted for high flow oxygen. He was positive for his good friend rhinovirus/enterovirus…again. The older Cam has gotten the more bear-like he has gotten when on steroids, so it’s been a rough couple of days behavior wise. Luckily, he isn’t too congested & isn’t having fevers. Dr Pianosi is holding him at his current high flow level for the day, unless we would need to increase it, & hopes to let his body recover & then wean it tomorrow. Fingers crossed all goes as planned!
We are admitted on Unit 5, which feels so odd, since we are usually on Unit 6. Unit 5 used to be where my own patients were admitted for chemo, but with the reorganization, those patients have been moved. It’s nice to see some familiar nurse faces & still have some comfort even in a new setting.
Cam continues to get his monthly IVIg infusions & RSV vaccines. I’m convinced that the IVIg is why we were able to stay out of the hospital for so long. Hopefully this is just a short stay & we are back home for awhile after this!
Thank you to everyone who has reached out & all of the love & support! We couldn’t do it without such a great village around us!
-Kelsey, Dexter, Cam & Kenni
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