The hospital charges sent to insurance for just the month of October are staggering—likely well over a million dollars by now. On the upside, we met our deductible within two days of admission.
Today had some sweet moments mixed in with the hard. Evelyn and Mom spent time in the sibling play area, and later we played bingo together—Evelyn even won a prize, which made her smile so big, and she did a booty shake dance. Those moments matter more than anything.
Medically, they have been closely trending Evelyn’s hemoglobin, which has remained low and continues to slowly drop, do to needing to trend many labs, and drug balances. For a child her age, normal levels are between 11–15. She is currently at 7.6, and if it stays below 8 when they check it again, she will most likely receive a blood transfusion tomorrow.
There are pros and cons to transfusion..The cons include the possibility of developing antibodies, which could make finding a compatible heart match more challenging in the future and slightly increase rejection risk—though there are treatments for antibodies. Transfusions also add fluid volume, so her team will need to carefully balance that to protect her heart and lungs.
The pros are significant. A transfusion should help her feel better. She has been struggling to eat, more tired, cold hands and feet, becomes short of breath easily, looks pale and yellow, and her skin and hair have lost their healthy shine.
At this point, the benefits outweigh the risks, and we trust her team to walk this carefully with her.
Thank you, as always, for loving our girl and holding us up through this journey.
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