Life at Home

It's weird. Comfortable, yes, but weird knowing how things are completely different. We have spreadsheets for anti-nausea medication, we have large bottles of hand sanitizer around the house, and we have an endless supply of books & Legos & art supplies. (Thank you, Team Charlotte!)

It was a rough adjustment after being discharged. You know the feeling you have when you take a newborn baby home from the hospital? Panic? It felt a little like that!

Our main job at home was to keep Charlotte hydrated & fed. What could be so hard about that? Welp, everything. Her appetite was non-existent and she had no interest in water. Drinking in general was a no-go. Even the things we knew she loved carried zero appeal. Connor and I became stage 5 clingers: "You need more water?" or "Did you finish that applesauce?" or "Give me one big sip!"

We were really annoying.

Last Friday we debated going back to Children's for IV fluids. We were failing the one job they gave us! (I don't like to lose.) We had a family discussion with a nurse in the oncology department who talked us all off the ledge. Charlotte seemed to understand why we were up in her business every 30 minutes, and Connor & I decided to ease up a bit. It's been a learning experience for all of us. Next time we'll speak with her medical team about stronger anti-nausea medication while we are in the hospital and we'll keep a stronger at-home regimen immediately following discharge.

We eventually got a hungry Charlotte. One Eggo turned to three Eggos and that ultimately led to Eggos for dinner. We're sneaking in full-fat dairy where we can. Protein powder in smoothies, milkshakes, and oatmeal. I offered her ice cream for breakfast on Sunday. She said no, but let the record show I offered! We're still missing the mark on fluid intake. We're trying different water bottles, different cups... it helps initially and then drops off again.

Ultimately, we may need more help with getting her the nutrition & energy she needs to recover - a nasogastric (NG) tube. She's not in the danger zone yet, but it is something her team is monitoring closely.

She's been up and moving more over the last few days - the weather certainly helps! We have a list of PT exercises to do with her at home, which Connor and I (and our aging bodies) are thrilled about. As the saying goes: the family that stretches together stays together!