Part One: https://www.cougarboard.com/board/message.html?id=26207094

Part Two: https://www.cougarboard.com/board/message.html?id=26213437

Part Three: https://www.cougarboard.com/board/message.html?id=26218593

Part Four: https://www.cougarboard.com/board/message.html?id=26228386

Part Five: https://www.cougarboard.com/board/message.html?id=26234374

April of 2017.

Yet another surgery. Number four. And all before our little girl’s third birthday.

It was too much. Just too much.

To make things even more complicated, we now had a nursing baby. This meant my wife couldn’t stay overnight with our daughter in the hospital - only parents can stay in the CICU, siblings or other family members aren’t allowed outside of visiting hours. But even when we went to the step-down ward, we weren’t going to have our baby sleeping in the hospital overnight. Looks like I was going to be “sleeping” at the hospital until we were discharged.

We live about a 45-minute drive away from Primary Children’s Hospital (PCH). Much of that drive is either getting to a highway or getting to PCH once you get off the highway. It’s not too far as the crow flies, it just takes a while. So outside of making a regular schlep to and from PCH every day, what to do now that we have a 7-month-old baby to manage during this crisis? We decided we’d stay for a few weeks at a hotel near PCH. My mother-in-law, a retired nurse, came up from Arizona and we paid for a room next to us. We figured that by being close to the hospital, I could crash there at night or snag a nap during the day and my wife and I could more easily tag-team between the hotel and the hospital.

It was a good plan in theory. In execution, it was more difficult and limiting than expected trying to watch/entertain/feed our two boys in a hotel room, even with my mother-in-law’s help. We checked in the day before the surgery. I don’t think we lasted a full week in the hotel before checking out.

My fear was getting the better of me. I did not feel good about this surgery. Part of me felt like we had escaped disaster three times already and how many more times could we reasonably expect to get through an open heart surgery and/or the recovery without major roadblocks or setbacks?

My mind went to worse-case scenarios. I’ve read that this is a relatively common defense mechanism: if our minds can think of it, then it can’t or isn’t really going to happen.

It was this fear that kept me from giving my daughter a blessing. I didn’t want to put my hands on her head and then feel no guidance, no assurance, that all would be well.

So here we are, at the hotel the night before her surgery, and I haven’t yet given her a blessing.

We got everyone ready for bed and I picked up my daughter and put her on the small counter in the bathroom next to the sink so I could brush her teeth. She didn’t want to brush her teeth, which was unusual. I was trying to figure out why. That’s when she vomits on me, herself, all over the bathroom floor.

I just want this day to be over with.

Now, with all the stress and tension...and fear...it would have been normal for me to react in frustration and anger. Maybe even to blow up a bit and let out some of this steam. Who could blame me?

Instead, this deep feeling of compassion for my little girl came over me.

I picked her up and gently stood her in the bathtub while I went about cleaning her, me, and the bathroom. She kept saying “I didn’t mean to,” over and over again in this tiny voice while standing there in the tub. I kept reassuring her that no one was mad at her and that she hadn’t done anything wrong.

Clean up done, it was time for a family prayer. That’s when the Spirit whispered, “It’s time to give her a blessing.”

I have often thought about that series of events. It was a forceful lesson about the power of being in the right frame of mind, in the right spirit. I had reacted with compassion instead of anger and that had put me in the right frame to give my child a blessing. I’m grateful that I was nudged to compassion and that I listened. I could have easily ignored it. I could have so easily blown up.

The routine the next morning was the same for the previous two surgeries at PCH. This time we put our little girl in a red, plastic wagon and wheeled her to the white doors. She got a kick out of that.

I still hated the doors. Those bleeping doors. (Cougarboard filters won’t let me type a swear word. Believe me, I’ve tried.) For some reason, I’m much more composed for this goodbye.

Off to the waiting room.

We knew this wait was going to be our longest yet. It was going to take them a long time just to cut through the scar tissue of her previous surgeries. Apparently, scar tissue bleeds a lot, hence the slow go as they manage the bleeding.

I think we were the last ones in the waiting room, which had closed by the time the surgery was done. The room is still open to use, there's just no one staffing it once it closes at 6 pm.

They had managed to fit a 17mm mechanical mitral valve into her heart. It didn’t quite fit, so it sits a little above where the natural valve was (this is called a supra-annular mitral valve replacement). We had been given emergency approval to use a non-FDA-approved 15mm mitral valve, the smallest valve available, but once they cut into her heart they felt they could use the slightly larger valve to give her more time before she needs a replacement. They also successfully removed her aortic valve, replaced it with her pulmonary valve, and inserted a donor pulmonary valve.

That’s a complicated surgery, in case you were wondering.

With a mechanical valve comes blood thinners. The blood thinners (also called anticoagulants) reduce the risk of a blood clot forming on the small hinges of the mechanical heart valve. Blood clots = very bad, life threatening.

The goal when dosing with blood thinners is to get the patient within a specific INR range. INR is a test that measures how quickly the blood clots. A normal INR is between 1.0 - 1.5, which roughly equates to about 10-13 seconds until the blood starts to clot. The lower the number, the faster the blood clots. The higher the number, the slower the blood clots.

Our daughter’s therapeutic range is 2.5 - 3.5. We want her blood to take longer to clot. She takes Warfarin (also called Coumadin), which is an oral anticoagulant, every day.

The largest part of my daughter’s recovery was waiting for the medical team to get the dosing right. It’s much more problematic than you might think. They use a different anticoagulant during surgery and in the immediate recovery (Heparin, I believe). The mechanisms by which Heparin slows down blood clotting are different from how Warfarin works. So it takes some art to the science of switching a child from Heparin to Warfarin and then getting the dosing of Warfarin such that the INR tests consistently come back within range. If I recall correctly, we had to have three consecutive days where the INR test came back within range before we could be discharged.

Three weeks. That’s how long we were in the hospital because it took longer than expected to get the Warfarin dosing correct.

I spent most of those three weeks sleeping in the hospital. Once we moved from the CICU to the step-down ward, we got our own room with a couch that turned into a “bed.” It’s better than sleeping in a chair.

We were discharged on a Sunday and I was at work on Monday.

I was so tired. I should have taken a few extra days, at least one day, before going back, but I already felt guilty for being out for so long.

Our daughter would soon turn three and we would have some serious “adventures” learning to manage life with a child who was now on daily blood thinners.

More on these adventures in Part 7, which I anticipate will be the penultimate post.