It’s strange how when something monumental is going on in your world, you feel like the entire world should stop and acknowledge it. I see famous actors sponsoring causes and I want to call them and explain that they should REALLY be talking about heart defects. They are the number one birth defect and no one is talking about them! My son’s surgery has been scheduled for November 30th. I’m currently immersed in the world of high end medicine. My days revolve around capillary refill rates and tachypnic breathing. But the world around me continues. I’m living in a world where I see friends’ babies die and can only stand silent witness and support as best I can. Even the people who come in to help us out can’t really understand because they go home and sleep and live a life outside of this world, we are never outside this world.
We have at least 1 doctor appointment every week. We have a pediatrician, cardiologist, a gastroenterologist and a urologist in addition to our pediatrician. Our insurance company has assigned us a special care coordinator who is also a nurse. Her job is to ensure C gets what he needs when he needs it and ensure we are not overwhelmed by bureaucracy. I always thought that you had to go to war with your insurance company for every procedure when you or your loved one was sick. The media fosters the idea that the insurance companies are out to find ways to let you die so they can keep more money. So far I have found that to be totally untrue. We have a home health nurse who comes weekly to check C's weight gain and make sure his O2 sats are still close to 100%.
I now know there are two kinds of pharmacies and that the big stores like CVS aren’t really equipped to meet all drug needs, I never knew that all pharmacies couldn’t dispense all drugs. We found out when we walked into the pharmacy and handed them a handful of prescriptions and they said it would take 4 days to fill it. The prescription in question was for salt water, very specifically formulated salt water, but salt water nonetheless. In case I’m not the only person who didn’t know, there are compounding pharmacies which can make drugs and non-compounding pharmacies (like CVS and Walgreens) who can only dispense what has already been created.
When you go into the hospital the world narrows to that room in that time. There are no days and nights, just 12 hour shifts and 4 hour vital checks. Monitors beep and leads fall off and you learn to be nonchalant about idiosyncrasies that can panic even seasoned nurses, because for your child it’s normal. My baby breathes two to four times faster than the average baby at all times. I’ve had fights with ER docs about it and watched nurses who take vitals, stiffen and start to quietly panic until I tell them it’s OK. It’s a relief to be at the cardiac clinic, because there, they don’t even blink when his respirations are in the 70s. He’s a cardiac baby and he’s awake. We get excited when his respirations are in the 50s because that’s amazingly low for him. It’s going to be very strange for me when I can’t check on my son by watching him breathe from across the room.
I’m constantly exhausted now, but I wonder what I’ll do with my time all this is over. This is not what my poor husband signed up for. He loves our son, but the amount of work and coordination boggles the mind. We should be able to get a solid block of sleep by now. We should be bummed the off days when the baby wakes up a couple of times in the night; instead we wake him up every night to feed him. I wonder if he’ll still be sleeping through the night once he’s not running a marathon all the time. My pediatrician looked at me and said “soon, you will have sleep”. I know that well babies are not this exhausting, but I’ve never had one, so I can’t imagine it.
But mostly, I’m scared, I know he’s sick in my head, but he looks fine to me. He’s getting more tired and this is getting to be more work for him every day. But the thought of handing him off for surgery is terribly frightening. My baby is going to have open heart surgery and right now that is the scariest thing in the world.