Day 56

Last night’s nurse was sweet as pie but about as stealthy as a megaphone. Between her constant vitals checks and the four inches of hospital bed Benjamin left for me, I got precious little sleep. Fortunately, the boy slept soundly. I was wide awake at shift change and grateful to get out of bed, stretch my body, and hear the nurses’ morning handover.

I requested a blood chemistry screen, because I’m curious to watch Benjamin’s glucose since receiving Erwinia. Insulin and pancreatic function are impacted by this new medicine. His glucose rose a little but is still perfectly within the normal range. They saved the best for last on his report: Benjamin’s absolute neutrophil count (ANC) doubled overnight, from 67 to 134. With the same increase tomorrow, we could go home. I’m trying so hard to release expectations. We fully understand that these counts rise and fall unpredictably.

It keeps me grounded to read the moms’ group forum and realize that other families are inpatient for weeks, even months, on end. This will not be our last stay here. Hope is a powerful force, but not at the expense of adaptability and patience. It’s another critical balance we will find.

I’ve learned a lot during this week about how I will handle things the next time we live here. With flexibility in mind, we can bring our home schedule to the hospital. This week was a learning curve. There is no reason we can’t do schoolwork, exercise, meals, baths, etc. at roughly the same time as we do at home, barring procedures or particularly rough days.

I enjoyed two cups of coffee, several rows of knitting, and a chapter in my new book before Benjamin woke up. We got creative on our sixth straight day quarantined in this teeny tiny room. Yoga. Serious fort building. Lots of baseball. Beadwork. Collage.

I told Benjamin he could choose the time he’d get his schoolwork done today. I was extremely proud when he kept his end of the bargain without reminding. We are almost caught up, miraculously.

When Michael brought us dinner I took my chance at a shower. The showers here have some kind of governor on them. They just can’t get hot enough. My shower may be what I miss the most about home. I’m so thankful to Michael, his mother and sister, and our amazing neighbors for keeping our home fires burning. I’m told there are fresh flowers, fresh fruit, and fresh packages for Benji to open. I am picturing the rainbows dancing around the dining room in the afternoon.

Tomorrow, Benjamin will get his second round of Erwinia shots. We hope a trip south over the bridge will follow. Regardless, we remain grateful for healing, wherever it’s meant to be.

6 thoughts on “Day 56

  1. I hope yall will be able to go home for weekend. Thanks for update. Love and Prayers going your way. Give our strong Benjamin a hug and kiss for me. Love you guys.

  2. Praying for a weekend at home for you guys! How creative you are Laura just amazes me. I didn’t think of half of those ideas when we were up there for 8 days on the 6th floor! And boy do I KNOW about those showers and their bizarre temp mechanism. But I was often thankful for how sweet and accommodating that hospital was..the sweet staff that would come by with the ‘game cart’ and the surprisingly really great food in the cafeteria. I know its not as great as home but it sounds like Benji is getting the best out of his stay & treatment because of his Mama’s strength, creativity & determination and her mentorship on bravely advocating for himself. So inspiring you! Thank you for sharing your journey

  3. Love and prayers to lift you all up. It takes a tribe and it sounds like you have a huge one. Just know that i pray for you all and think of you all every single day.

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