The is 24 hours' worth of medication for Nolan. And before his heart surgery, there was only half of this amount.
6 different medications.
8 syringes.
Morning & night.
Prior to surgery, Nolan was only on 2 medications. We didn't know about his low heart function (low ejection fraction or EF). Basically half of his heart doesn't beat as strong as it should, in his doctor's terms "the free wall doesn't move as freely as we hoped it would." Once he was diagnosed with this, the medications changed, and doubled, then tripled quickly.
When we were first told about his low EF we were told, "his heart didn't like to be stopped during heart surgery. We see this sometimes. It's not supposed to be stopped and sometimes it doesn't power-up as well as it did before it was shut down."
No - We aren't talking about a computer. Those were sentences referencing my child's heart.
He would need to be treated for "heart failure."
So many scary words we never wanted to hear.
The amazing this is, these medications, made by some incredible scientist have helped treat his low heart function (his heart failure) and taken him from an EF of 33 to an EF averaging around 50. I included a picture of what these numbers mean as far as heart failure goes.
2 of his medications treat heart failure.
1 is a diuretic to help keep fluid off his lungs since low heart function can cause fluid build-up.
2 are supplements that he has a lower level of, one of which is iron, the WORST tasting medication ever to be invented.
And the final 1 is an antacid because, well, look at the above list.
Lesson to learn - Just because heart-surgery is behind us and he doesn't "look sick" there is a daily fight that our sweet Nolan has to fight. An easy day for him is still a lot. And each syringe is a reminder that CHD is for life, and this routine is likely one he will have forever.
I am thankful for each one of these syringes. They kept him alive. They are keeping him strong. They are helping him fight. They are helping him prove everyone wrong.
This picture is our reality. It is Nolan’s day to day routine. It is all we have ever known, and we are thankful for each drop.
This video is of his first time ever taking medication. He was 22 days old and was started on a diuretic to help get the fluid off his lungs. If you turn up the volume you can hear how labored his breathing was. This was his normal breathing pattern until post-surgery. Watching this brings me back to those moments. We knew so little. We were so scared.