Just before a shift change earlier this week, I said to our nurse, "This may sound odd, but Jade's eyes are not as bright as they normally are." No secretions. No itchiness. Just not my bright-eyed girl. The following morning, some pinkness was detected so out came the dexamethasone eye drops, which are usually given to leukemia patients to prevent conjuctivitis, or pink eye. Needless to say, Jade was not too happy about any of this; the drops can cause a burning sensation in the eyes and are administered every six hours, which inevitably meant having to wake her at 2am or 4am for a dose... Well on further examination, it turns out that it wasn't pink eye at all. Yay! Just a little capillary hemorrhaging. (Ummm... I think I'd rather the pink eye.) It actually sounds much worse than it really is. Essentially, tiny blood vessels in Jade's eyes burst (which apparently happens even in healthy people if one sneezes, coughs, etc. too hard.) Her low platelet count, which had dropped to 7 and prompted a platelet transfusion Friday morning at 7:30, likely contributed to this bleeding. There is, apparently, no danger to her vision or the eye, and no course of action to be taken: just wait a couple of weeks for the eyes to absorb the blood naturally. So, we'll just wait on that while we wait for her ANC to rise too; it was still at zero today.
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| Our regal kids with Ms. Jessica at the end of a Culture Kingdom Kids day. |
Waiting is, afterall, what we do now...
For lab results,
blood counts to recover,
the dinner cart,
a miracle.
It's easier to pull off during the week with the distraction of the play room and art room on the unit, the full staff (social workers, music therapist, child life specialist, etc.) in the building, the hub-bub of a hospital during peak operational hours. But the weekends can be brutal. The play room and art room are closed. Staffing is adequate, but skeletal. Quiet is the norm. And families like ours are walking countless loops around the unit (it's 18 paces for each side) or entertaining themselves in their rooms to pass the time. So, imagine how thrilled we were for today's visit from Jessica Smith of Culture Kingdom Kids, which produces children's workshops, parties, and play dates to teach cultural heritage through the arts.
I only met Jessica once before and very briefly at a December reception and photo shoot for Prince George's Forty Under 40 awardees. But when she learned that Jade was sick, she didn't hesitate to reach out and offer the kids a change of pace from a typical day at the hospital, which meant so much with my concern/guilt about the amount of time Lil Jay spends in the hospital and Jade not being exposed to enough stimulating material and activities during these month-long hospital stays. Jessica took a couple of hours out of her Saturday and arrived with freshly sanitized instruments and toys :), Culture Kingdom Kids t-shirts, books, crowns, and music in tow. With a story time that got Lil Jay talking about what he likes about himself, a rowdy instrument and dance time that took us from a Ghanian schoolyard to Disney's Choo Choo Soul, and cool-down time with an African-American history/coloring book, we had a certified party in Room 415! At one point there were two or three nurses outside the door jamming along with us. We all really had a great time, but seeing Jade parade around the unit in her crown so proudly, Lil Jay make up his own dances, and my husband relive his marching band days -- albeit with a pint-size drum -- was the most special part for me. We haven't had many moments like this in 2012... Thank you for this moment, Jessica, and for welcoming us into the kingdom! We thank God every day for such supportive friends and family.
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