We got an AED for Christmas.

We got an AED for Christmas.
The week after we were discharged, I knew Sam was not his typical self, even post-illness.
He just wasn’t recovering in his usual fashion. In fact, he looked worse, and I couldn’t help but question whether or not we should have stayed in the hospital.

I remember thinking I had made a mistake after Red Team had rounded that morning. They were asking me if I wanted to go home; if I was comfortable taking him home. Of course I wanted to go home! We had spent almost 2 months in the hospital. We had to celebrate my birthday and Katie’s birthday on Unit 2. I wanted to be home for Christmas at the very least.
But it was greedy of me; greedy for my family to spend any time together. I missed being “the Four Family”, as Katie likes to calls us.

After a difficult conversation with our Cardiologist, where she essentially told me that Drew and I should make sure we had our CPR up to date, I realized that I was unprepared. Since his birth, I hate being unprepared. Although, nothing prepares you for the moments where you literally have to keep your child from dying.

I have done that more times than I care to remember.
I have called 9-1-1 more times than I ever thought I would.
(Remember when you were a kid, and you thought about really having an emergency and needing to call them? Yeah, well.. not as cool as you’d think).

Another hospital Mom, who is one of my closest and dearest friends, loaned me her hospital grade vital signs monitor, a 400L oxygen cylinder with a concentrator that delivered up to 15L/min, a tabletop pulse oximetry unit, and an automated external defibrillator.

I went home that day feeling nothing. Not dread, not hopelessness, not even preparedness despite all the equipment. PTSD. Shock. All those self-defense mechanisms I have in place that allow me to function on a daily basis.

But I tucked it all away (although not too far away), and I tried to have a proper Christmas.
I knew from my previous conversation that we would be on our way to Edmonton in the next few months. Maybe weeks. Part of me prayed that we wouldn’t go up for until the New Year, but I also felt terrible for putting our family’s “normalcy” before Sam’s heart.

We ended up being admitted again over New Year’s Eve. He ended up with influenza and wasn’t safe to be at home. We pushed for home oxygen at the time and were able to secure it only hours before discharge.

Since then, it’s been touch and go. Sam has been struggling daily with the smallest of activities, with eating, with sleep.

 

Heart failure is hideous looking, even more so on a child.
I said to our nurse, “He never looked like a heart kid before. Now, it’s obvious.”

We went for our echo yesterday. They looked at his function to see if it had declined.
They had a therfew plans of attack, depending on the degree of failure.

Plan A: Medical Management 

 
We can be admitted and play with some of the medications that he’s currently on, ensuring the maximum doses and combinations are being met. But this means exposing him to all the nastiness that floats around the hospital and that could put us in a worse position.

Plan B:
Milrinone is a powerful inotropic drug.
1) It increases the power of a heart’s contraction, and 2) reduces the pressure in the body, so the heart doesn’t have to work as hard.
It can only be given intravenously, so a more permanent line to deliver the medication (like a PICC – Peripherally Inserted Central Catheter) is needed. This plan also includes an admission to the ICU. Milrinone needs to be administered carefully and titrated slowly. It can cause arrhythmias and all sorts of other scary things.

Plan C: VAD

This plan is an extension of Plan B but with the addition of a mechanical assist device. A VAD (Ventricular Assist Device) does the work of the heart by taking over pumping the blood in the body. It can be used as a “bridge therapy” to assist the heart until a donor heart becomes available or a “destination therapy” for long term use if transplantation isn’t an option.
This plan will warrant another open heart surgery in Edmonton and an extended stay there while waiting out a rejection period and so on.

So that’s it.
There are the reasons we have been quiet and out of touch.
We have been carrying this for a few weeks now, but it’s becoming more and more real by the day.