As I get ready to take Dolly out to Boston for a consult, we have had to gather our paperwork and records from the other two centers she has been seen at. Yes, this will be the third major children’s hospital to care for our tiny girl. Gathering that paperwork has been quite a task. Thankfully, it’s all done now and it’s filed away in her Great Big Book of Medical Records.
We were in the lobby of one of the aforementioned children’s hospitals today for an appointment for Mighty. They had their annual radio-thon going on. As I passed by, parents were sitting on a platform with the local deejays, surrounded by broadcasting equipment, telling the story of their child’s illness, praising the services of the children’s hospital and asking everyone local to donate money to support ongoing building projects and research within the hospital. It is a worthwhile and noble cause. When the interview was over, I watched happy families hop off the platform and get ready to go home.
Before I say what I’m about to say, I want to state, for the record, that I am incredibly blessed to have ANY medical care for Dolly. Please don’t think for one second that is lost on me. She lay in a crib for the first two years of her life slowly dying. I get how lucky we are. But, that doesn’t change the emotional reaction I have to our complete lack of local care. I would love to have a ‘home’ for Dolly’s care.
At this point, she has THREE Cardiologists and TWO Nurse Practitioners that manage different aspects of her heart related needs. I have to think carefully about who to call when an issue arises, and sometimes, I’m still not correct. I have a Master’s Degree in Nursing, and I still can’t always figure out who is in charge of what. Getting an answer to even the smallest questions sometimes takes days as all the parties have to chat with each other about the answer. There’s also a ton of travel involved in every single follow-up and test. The next trip will take us to the other side of the country where I know no one and have never been inside the facility where she’ll be receiving care. Again, I’m so glad for the possibility of receiving this level of care, but I would love to tell our story at OUR children’s hospital’s radio-thon and then hop down off the platform and head home, and not 2000 miles either, to our home that’s a 15 minute drive. I would love to raise money for OUR hospital, or to attend the heart walk or wear a t-shirt with their logo with pride. We won’t ever be able to do that.
We have the wrong special need for living where we do geographically. I’m glad I didn’t know that going into this, otherwise, without knowing our Dolly, I may have missed out on the joy that is parenting her. As a nurse, I know how important having a medical home is. We don’t have that, and along with my anxiety about the upcoming trip, I’m grieving that a little. But, I also refuse to compromise her care for the sake of geographic proximity.
I would give it all up a thousand times over to give her the best chance at life.
I’ll keep telling myself that as I pack my bag next week.
–FullPlateMom, who feels a little overwhelmed.