Heart Month Day 6: Medications

When you first discover that your child has a CHD and will need surgery, it’s overwhelming. More often than not, you are just trying to get through the waiting, then the surgery, then recovery, and then home. It’s often a shock to discover that surgery has not “fixed” or “cured” your child.

When we brought Mira home from the hospital, she was on 6 medications that required a total of 15 doses per day. We got a dry/erase board and made a chart so we could check off each dose and keep track because certains meds lined up with various other meds at odd intervals and others had to be taken an hour after another. Figuring out how to give a 1-year-old medication that doesn’t come in liquid form was difficult. We had a pill crusher and “sippy fruit” that got us through until Mira was three or four and learned to swallow pills.

Patrick actually came home in fewer meds, although his increased with time, needing aspirin, Lasix, Tylenol, the top tier $60/month stomach med, and a crazy-expensive specialty formula (think $100/ small can, mail-order only) that had to be added to breastmilk to make sure he was getting enough calories.

NG tube

And since there isn’t a better place for this, let’s talk about feeding tubes. Mira had an NG-tube while in the hospital, but we fought like hell to get her home eating by mouth. There was no way I could be responsible for that. With Patrick, there was no choice. He was coming home with an NG-tube and we had to learn how to insert it so we could put it back in when he pulled it out, and to replace it each week. We even had our own stethoscope so we could listen to tune placement and make sure it was in his stomach and not his lungs.

I cannot explain to you the shock and PTSD I experienced the first time I had to give myself a COVID swab and felt it going into that space. I had flashbacks of shoving those godforsaken tubes up Patrick’s nose and it shook me. As scared as I was for him to have surgery to get a G-tube, I almost wish we had done it sooner as life was waaaay easier after that. Plus, we could see his beautiful face, and it was easier to keep him from pulling on the G-tube than one stuck to his face.

NG Tube

Tube-free face!

G Tube