We spent the better part of the winter hibernating with Hope in an attempt to delay her first battle with illness with a suppressed immune system. It largely worked, outside of our hug-flu scare. We spent a wonderful weekend at the lake with family. We were so careful, but despite our best efforts Hope managed to grab a visitor and fight some viral congestion off. Who knows where it came from; it could have been from John or I for all we know. So Monday we heard ‘the cough’, Tuesday night she quit tolerating eating and was up All. Night. Long. Puking and Crying. By Wednesday morning we were on the phone with transplant trying to figure out the right action to take with closer and closer monitoring and some distance from Dad (who hadn’t been feeling too hot on Monday, himself). By Friday, a clear outline of inflammation and redness had developed around her G-tube and we had bought ourselves a day at CCHMC visiting with various specialists plus a visit to her pediatrician just for safety’s sake. Antibiotics and labs were prescribed and by Sunday we knew that the antibiotics weren’t having an impact and the labs showed troubling results – a certain part of her white blood cell count was dangerously low – think a chemo patient that has just had their immune system wiped. She was now at a much higher risk for acquiring a bacterial infection she couldn’t fight, not to mention that fighting an existing one would be challenging without some inpatient support. Monday we were admitted and Hope got some help from a broader spectrum antibiotic and a hormone to help her create more of the particular type of cell she needs to fight infection, but still not reject her heart. Her admission was greeted by a team of her special friends in the hospital. She was quite a little celebrity, albeit a cranky one. A three-day reunion was all it took to establish that she was responding well and could continue the course at home with careful monitoring of her response.
What would have normally not even required a pediatrician visit wound up taking an incredible amount of time to properly diagnose and treat for Hope. It was a great learning lesson that even simple things are going to be more time consuming and more complex for her because of the transplant. The worst part was that I had a work trip that I couldn’t skip right smack in the middle of this. Any rational mother would struggle with the decision, just as I did. Am I heartless for traveling while she’s in the hospital or should I recognize that my role is to maintain our family’s insurance and that will require me to travel sometimes when John has things under control (which he did)? John was so supportive and helped me feel more comfortable traveling, knowing that there wasn’t anything I could possibly do for Hope by skipping the trip.
We are home now working on keeping up with a hectic week of Q6 antibiotics – so if John and I look tired this week, it’s probably because we are. I think heart transplant parents should automatically get a script for some high-level no-doz! What’s one more med?? Just kidding!
Even though we struggled with this, Hope still manages to give us some of her best smiles. She’s 10 months old and we have a big birthday coming up very soon!