Samuel’s heart journey: the Glenn

The COVID-19 pandemic has played an interesting role in Samuel’s infancy. From banning visitors in the hospital at his birth to creating requirements for masks at all hospital visits, the coronavirus had its last laugh by infecting Matt the day before Samuel’s second open heart surgery.

Let me back up. After Samuel’s first open heart surgery in June, we were informed that his second surgery would need to occur in the next four to six months. As the months quickly passed, I watched Samuel’s O2 levels dip. When it reached the 70s, I knew the day was nearing. A heart cath procedure at the end of October confirmed that Samuel was a sure candidate for the next surgery, called the Glenn.

Samuel’s surgery was put on the calendar for Nov. 10, giving me just shy of two weeks to prepare. I’m not one to enjoy wallowing in anxiety, so I was a big fan of the short window. I spent those two weeks preparing for the hospital stay, making sure meals were set for home while I was away, and most certainly NOT thinking about the surgery.

The timing was perfect. Samuel would be home before Thanksgiving, and his 6 weeks recovery period would be up before Christmas.

November 9 came quickly. Matt woke up that morning with some sniffles and thought he should schedule a COVID test just for safe measures. I continued on to Samuel’s pre-op appointment without a worry in my mind. Just an hour after arriving home, I learned Matt was indeed positive. I called the hospital. This was the first instance of its kind for them. They contacted Infectious Disease Control and determined Samuel’s surgery would need to be rescheduled at least 4-6 weeks out, in case I or he came down with symptoms.

I was torn. On one hand, it was nice not to have to face surgery the next day. On the other hand, I would have to endure so much more time thinking about the surgery. For the next two weeks, Matt quarantined in his home office. His symptoms were minor, and no one else experienced symptoms, praise God. Samuel’s surgery was rescheduled for Dec. 14, and I was determined to not let anything else push that date back again. I wanted to leave these surgeries in 2020.

From Nov. 10 to Dec. 14, we quarantined to the best of our abilities. This meant no Thanksgiving with family, no church attendance, no grocery store visits and all online Christmas shopping. We made an exception to get out when my Nana’s health was failing. The boys and I made a visit to her window where we saw her one last time two days before Thanksgiving, something that may not have happened if Samuel had just come home from surgery like originally planned. That weekend we masked up and saw some family at her funeral.

Dec. 14 arrived and I felt much more anxious this time. The “what if things go wrong” thoughts invaded my mind. But God gave me peace as we sent our son back for his second surgery, putting his most delicate life‐giving organ in the hands of a human surgeon. A little more nerve-wracking fact about this procedure was that Samuel needed to go on bypass, which means a machine temporarily took over his heart and lungs during surgery.

He went to the operating room around 1:45 p.m. He came out around 8:30 p.m. We kissed him on the way to ICU. Matt felt relief that the surgery was finished. I felt fear for the recovery ahead, as that proved to be the most challenging part of the first surgery.

The next few days were surprisingly smooth. Samuel sailed through recovery with no setbacks. I dreaded something I’d heard about called “Glenn headaches.” He showed a few signs that he felt pain in his head, but not too much. The oddest thing was the puffiness that seemed to linger for a while from fluid. The surgery was on Monday afternoon, and he transferred from the ICU to the Step Down Unit Wednesday afternoon. We spent the next few days working on pain management and helping him cough out excess fluid. Our cardiologist Dr. Loar was rounding over the weekend, and I could not be more thrilled for him to see Samuel’s progress. He was encouraged and gave discharge orders for Saturday morning. We were home just five short days after Samuel’s second open heart surgery.

Recovery at home has been much gentler this time around. The toughest hurdle has been sleep. I expected some setback in sleep from hospital interruptions, and he delivered in that area. All in all, one can hardly tell he just went through a major surgery.

As we prepared to leave the hospital room on Dec. 19, another heart mom and her 18 month old son passed by. They were taking a walk around the floor. She congratulated us on leaving, and I asked how long they had left. She was unsure as her son still needed to learn how to eat. At 18 months, he still required a tube for feeding. I felt sad leaving that day. While I know Samuel’s heart condition is serious, we are fortunate that he recovers quickly and has no trouble eating. Many families spend weeks, even months in the hospital following surgeries. I pray for these families often. I can’t even fathom the helplessness they feel at times.

We are glad to be home enjoying a new, hopefully surgery-free year. Samuel will need one more surgery around the age of 3. Until then we will continue doing as we always have – enjoying life as a family of four and praising God for our miracle heart baby.