Oh my gosh. How do you even begin to recap today? Dolly made it through the procedure. No one had any trouble intubating or extubating her. We sailed over that hurdle.
We stumbled and fell over all the rest.
Her catheterization results aren’t good. She has the major lung damage we thought she did. The arteries in her lungs that carry oxygenated blood have been severely effected by the high blood flow she has been living with. The Cardiologist described them as “pruned”. If you think of these arteries as a tree, branching in many directions to allow blood to flow to her lungs, it’s as if someone pruned off a significant number of Dolly’s branches. This is going to cause long term problems.
Hearing this news was the major pit of the day.
How we heard it totally did me in though. As a medical team member, I think the way one delivers bad news directly effects how the family reacts, and subsequently, the choices they’ll make regarding their health care. One needs to be real about what the patient’s outcome looks like, but you can’t take away every bit of hope. Today, the doctor who did Dolly’s procedure came to FPD and I and told us what he thought we needed to hear. He respected us enough to give us the worst case scenario, probably because he thought we could handle it. He gave us the results of the cath and then he told us that it would be an option for us to do nothing for Dolly, that maybe we needed to consider Dolly’s quality of life. He told us that, as a matter of fact, it could be possible that doing nothing would be our only option. For a moment, I felt all hope vanish into thin air.
I lost it. I put my head between my knees and told him that I thought I was going to be sick. We had researched, we had read, we know other people that have done this with babies like Dolly. In my head, I know there are options outside the four walls I currently sit in. My heart ruled though, and I could only think how we got to a point SO quickly where there are NO options? How is that possible? As this doctor sat in front of me, someone who is medically trained, I listened to what he said because he was the authority figure. I took it as our only option.
It’s not. After completely flipping my nut, I realized I’m at a crossroad. I told Dolly’s excellent pediatrician earlier this week that the thing that scared me the most about working through Dolly’s heart disease is that ultimately, the choice will fall on me. When your child has cancer, someone tells you what kind and then there is a standard recommendation for which medicines to use to treat it. It isn’t like that at all with Congenital Heart Disease. I’m driving this CHD train. I will have to choose. At the time, it scared the crap out of me.
Today, driving the train is the peak of the entire day. I can drive this train right to Boston, or to CHOP, or to UCSF, where there are Pulmonary Hypertension Clinics that might buy our Dolly some time. Maybe we buy her five years until a new drug comes onto the market, or there is a new procedure to treat her PH. Maybe we buy her ten years until she is strong enough to take on a transplant, and who knows what advances there will be in the field of heart transplants in that time (if someone could get on growing new heart or lung tissue in a lab, like now, I would totally appreciate it).
I don’t know what I’ll find when I make the choice, but I do know one thing, I’m sure as heck not choosing to do nothing and watch our girlie die. Dolly didn’t choose that all those months she sat there and waited for her family. We owe it to her to fight just as hard as she did.
So, we’ll do just that.
who is ready to put on her conductor hat and get this show on the road.