Lily had her 2nd surgery of the year, this time to take the spleen out to correct the HS and so far so good. We really wish we had known back in January what we know now, that way they could have taken the spleen and the gall bladder all at once.
In any event, we’re just hoping that this turns out to be the right long-term answer. Her hemoglobin numbers are in the low 7’s at best and possibly in the 6’s. She struggles with any kind of sustained physical activities, which was apparent in T-ball. The downside is she’s probably (up to the doctor) going to be on a daily antibiotic until she’s 18 and there’s just not a lot known yet, with certainty, about long-term life w/o a spleen.
In 3-4 months, once the transfusions wear off, we’re all going in for genetic testing to get more details on what exactly the defect is and where it came from. It’ll be important for the girls to know, if at some point in the future they decide to have children.
Here she is a little less than 24 hours after surgery.