The Miracle of My Daughter, Part Three

May 29, 2021
7:43:19pm

NewYorkCougar Playmaker

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

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

2014 felt like a blur, which is something of a paradox considering everything that happened. Surely that was longer than a year?

We arrived back in Utah a few days before Thanksgiving and were able to celebrate the holiday with family. We were staying in an apartment on a 3-month lease while we looked for a home. My wife was in contact with Primary Children’s Hospital the Monday after Thanksgiving trying to set up an appointment with one of their pediatric cardiologists. We knew time was ticking, so we were open to taking an appointment with the first available cardiologist. While that’s not an ideal way to choose your child’s cardiologist, it’s not like we were experienced enough at the time to know how to go about choosing one.

We had an appointment in December and after an initial evaluation, her cardiologist scheduled a sedated MRI, which occurred in late December. He was alarmed by the results. He didn’t know how our daughter was doing as well as she was doing. Next step was to schedule open heart surgery to repair the aortic arch as soon as possible. Only there was one slight problem: our daughter got sick the night of her MRI and was diagnosed with croup. That triggered a mandatory 6-week delay in the surgery. You can’t do open heart surgery on a sick child with compromised lungs.

Looks like we were going to start 2015 with an open heart surgery.

We didn’t know how serious it was to wait 6 weeks for the surgery. So of course we stressed about it.

This is a good spot to point out that we were only just beginning to realize the limitations and sacrifices coming for our family because we had a heart kid. We would soon become social hermits in an attempt to keep from bringing any sickness into our home. And we’d learn to deal with well-meaning but misguided comments from family and friends about how great our daughter looked. Of course she looked great on the outside. What’s threatening her life doesn’t typically manifest its obviousness until the child is in serious trouble. You don’t wait until then to act because then you are operating on a compromised child and your chances of success are lower.

But I digress...

In January we found a house we liked...finally...and made an offer. After some back and forth and raising our offer once, it was accepted (my, how the times have changed, eh, Cougarboard?). While we were grateful to get that done, the timing was awful. Everything conspired to occur in February — the surgery, the closing, the lease ending on our apartment, and moving into the new house.

Stress, anyone?

I’m going to run you through the protocol (as best as I can remember) of taking a child in for open heart surgery.

The day before the surgery date, you take your child in for a pre-op appointment. They take vitals and run a few tests to make sure your child is healthy enough to operate on. You are there early the next morning. Vitals are taken again. You meet some of the members of the surgical team. The surgeon tells you what he or she is going to do. You go over and sign the disclosure and consent documents. You are shown the waiting room and they explain the protocol for communicating with you during the surgery - they call the front desk in the waiting room and you are summoned to take the call; if they can’t find you, they page you the update on a pager they give you (yes, they still exist!).

At some point, the anesthesiologist comes and sedates your child.

And then you take your sleeping/sedated child in your arms and walk with the anesthesiologist to the big white doors that lead to the operating room (OR).

I told you that I’d come to dread those doors. They represent all the unknown, uncertainty, and fear you’ve been trying to manage. You’ve done everything you can for your child. Now it’s out of your hands.

Literally.

You then go back to the waiting room. And wait.

For a description of surgery #2 and its immediate aftermath, I”m going to share details from something my wife wrote. It’s lengthy, but gives a great summary of the surgery and insight into how she was processing all of this:

“The aortic arch was enlarged with a pulmonary homograft patch and the surgeon attempted to address the stenosis of her aortic valve via valvotomy. The report immediate post op was that she had done well, that the surgeon had accomplished what he had set out to do. Like with her first surgery, the narrowing in her aorta was very severe. The surgeon said he could hardly get his scissors into the interior of the aorta to even open it up because the lumen was almost completely obliterated. It truly is a miracle that she did as well as she did for so long. What kept her alive? Approximately 3-4 small collateral vessels. Wow. Her body did amazing things to compensate for such a severe compromise.

“In the days following her surgery, she had trouble with her lungs collapsing and the possibility of reintubation was suggested (and prepared for) several times. One morning I walked in to see her struggling to breathe, with oxygen SATS in the mid-60s, and she was terribly discolored. That was unsettling, a difficult circumstance to process and face. One of the hardest parts for me about CHD (congenital heart disease) is that on a day-to-day basis she is asymptomatic. The morning of her surgery, we handed a completely healthy-looking and health-acting nine-month-old baby to the anesthesiologist. And then to look at the aftermath. As a parent, it's difficult to subject your seemingly healthy child to so much trauma. You do it only because the alternative is worse.

“After her lung situation stabilized, she did much better and progressed well. She was ready to be transferred out of the CICU but they didn't have any beds on the main floor so we camped out in the CICU for another couple of days before I convinced them they could discharge us directly from the CICU (not a common practice). I was grateful, almost ecstatic, about a short 9-day hospital stay. I was less enthusiastic to learn that during this surgery her recurrent laryngeal nerve sustained significant damage and, as a result, she silently aspirated during her bottle feeds. I was not at all prepared emotionally for another feeding tube. Not at all! But when you don't have a choice, you do what you have to do. She went home on continuous feeds (with a pump) and on Propranolol (to help slow down her heartbeat in order to give her left ventricle more time to fill), which she continued taking for only a couple of months. At 9-days post-op she was only on Tylenol and Ibuprofen for pain.

“On a side note, the weekend before the surgery, we moved the contents of our storage unit into our new home. At the time, we did not know when our sea container would arrive so we hurried about gathering basic home supplies (beds, towels, basic kitchen stuff) so we could move into our house (we had to be out of our temporary housing in mid-February). The weekend after she was discharged, our sea container had arrived so we moved its contents into our home. To say that February 2015 was a stressful month for our family would be a gross understatement.”

Let me tell you something my wife graciously did not mention in that summary. We brought our daughter home the day after we officially moved into the new house and one day before my wife’s birthday. And on her birthday, we did nothing. Sure, we were all exhausted from the surgery and the move, but to this day I still feel awful that I let that happen. I dropped the ball, big time.

We settled into our new home and were relieved that our daughter’s recovery was going so well. She would continue to grow and thrive and her bright personality continued to emerge.

And then in early May, our little girl got sick.

This was only the second time she was sick, so we didn’t have much experience dealing with a sick heart baby. After a few days of sickness, my wife was unsettled by how lethargic the baby was, so she took her to the InstaCare at the local hospital. They were alarmed that her blood oxygen saturation levels (often referred to as ‘sats’) were in the low 70s. Normal sats for our daughter were in the low 90s. And when they learned of her heart history, they “freaked out”, in my wife’s words. They aren’t equipped to deal with a medically complicated heart baby.

The InstaCare staff wouldn’t let my wife take our daughter to Primary Children’s ER. They summoned an ambulance and away they went. As my wife puts it, this was an expensive “rookie mistake” and one we’d never make again.

Our daughter was admitted to Primary Children’s Hospital (PCH) with RSV and was released after 6 days of treatment, mostly oxygen support to prevent her already complicated heart from working too hard.

Weren’t we just here? Oh yeah, less than three months ago! Talk about a one-two punch.

I was struggling at work. There was a lot of tension between my manager and me. Much of it my fault. I felt betrayed that no one in the US had my back when the opportunity to run this team came up. That frustration was readily apparent. My manager wasn’t without fault. I don’t think he ever asked how my daughter was doing. Or how I was doing. He was cold and calculated. Distant and ambitious. One of his favorite sayings was “I’m not here to make friends. I’m here to get results.” He made good on both counts.

In August of 2015, the opportunity came to move to a new position, one the company had never had before. I liked the idea of using my previous experience to create a new function, so I made the lateral move and went to work for a boss who was kind and warm and one of the most decent human beings I’ve had the pleasure to work with.

She was not LDS. She was not based in Utah. She was a blessing.

Her support and compassion for our family would lead to an amazing gift. One I didn’t know I so desperately needed.