No Sigh of Relief

Life with a medically complex child is almost always more inconvenient than with a healthy child, but there is one exception – triage.

Walking into the ER at Children’s Medical Center with Audrey is like walking into the hottest ultra-douchey nightclub on Opening Night with Kylie Jenner. You bypass the line and go straight in to see the doctor.

We have been there with Audrey (the ER, not the ultra-douchey club) several times when her feeding tube came out. The doctors told us you have about an hour until the hole in her stomach starts to close, and that could mean surgery to reinsert the tube. When you tell the admissions desk her tube is out, you get to walk past a waiting room full of people with various states of medical need. I try not to make eye contact as I walk down the aisle to avoid the imaginary daggers being thrown at me. I don’t judge them because they don’t understand that if they knew the whole story, they would never want to change places with us.

Being a frequent visitor at the Children’s Hospital also makes the check-in process more entertaining when they are training someone new at the registration desk.

Trainee: Can I get the patient’s name and date of birth?

Daddy: Audrey Hunt, 8/27/2019

Trainee: “Has she been here before?”

Daddy: “Do you want to see our Rewards Member punch card? I think we get a free blood transfusion with this visit.”

Trainee: “Can you run down her medical history for me?”

Daddy: “When does your shift end? We are going to be here for a while.”

Trainer nurse watching the interaction speaking directly to the trainee: “When you see a patient like this, just scroll to the end of her history and ask if anything has changed since their last visit.”

I’ve been on both sides of this, so I didn’t get mad when several families jumped ahead of us during our visit last week. We were there to treat a UTI, I can’t imagine what the other parents were going through. That’s not true. I can imagine. If you think waiting two hours to see a doctor is inconvenient just imagine having to ride with your child in an ambulance to the hospital or seeing their oxygen level drop into dangerous territory. I’ll take the UTI every time. Life in the children’s hospital reminds you that there is always someone that has it better than you and always someone that has it worse than you. As hard as life has been with Audrey I do not complain because I got to take her home after every single visit.

Audrey has had several UTIs, and the doctor said his main concern was that each time the amount of blood in her urine increased. She has officially moved from a “moderate” to a “significant” amount. It doesn’t mean anything now, but I always worry about the unknown with her. Is she going to have kidney problems on top of everything else?

You are never in the clear with a medically complex child. There is never a sigh of relief. There is no shutting the door of worry behind you as you walk away from a scary situation.

Maybe that has nothing to do with a medical condition. Maybe that is just parenthood.