Marking One Year Since Caitlin's Surgery

Full disclosure, this is an extremely long post. But as July 13th marks one year since Caitlin's surgery to remove a tumor from her spine, I felt I really had to write everything down before I forget. Mostly because I don't want to forget the good deeds of so many people who helped us. But also so that when days are difficult, I don't forget just how much more difficult it was.

The first signs of Caitlin's condition had begun shortly after Jordan's birth in October of 2018. She began to complain of numbness in her legs and midsection. Seeming to worsen with the subsequent arrivals of Rosemary and Damian, nearly all medical professionals (and non-professionals like myself) simply didn't know what to make of it, and chalked it up to pinched nerves that hopefully would alleviate with time. But in the end, one professional deemed it worrisome enough - possibly MS - so as to recommend an MRI.

It was the Friday of Memorial Day weekend, the kids were finally asleep and I had just finished packing for our trip to Savannah the next day when Caitlin called from her MRI appointment: "Well, the good news is I don't have MS. The bad news is they discovered a tumor in my spinal column, and sent me immediately to the ER." Apparently the blockage of spinal fluid and pressure against her cord looked so advanced, the consulting doctor was shocked to discover she wasn't confined to a wheelchair. My brother in law generously came to stay with the kids, while I drove the (now all too familiar) 45 minutes to Fairfax Hospital.

Thankfully Caitlin was discharged, and we were able to make our trip the next day. No one knew for sure how much longer we could postpone addressing the issue, but the consensus was basically this: the numbness she had now would never abate, and would only get worse. Surgery might prevent future complications. However with a four month old baby and two other kiddos under four years, it seemed wise to wait as long as we could. We planned at the very least to wait until the fall, when Damian would be weaned.

However the next week, the symptoms grew worse, and the thought of sudden and permanent loss of mobility was a bit much to bear. We felt we couldn't wait, and scheduled the surgery as soon as possible. We tried to enjoy the next couple weeks pre-surgery, and prepared as best we could. We had no idea what lay ahead of us, but like most things in life, that's probably for the best.

Both sets of parents arrived ahead of time to watch the kids. My mom and dad brought custom printed purple t-shirts with Padre Pio's famous quote: "Pray Hope and Don't Worry". When we signed in at the hospital, I absent-mindedly placed my nametag over some of the text so that it read instead "Pray, Hope and Do Worry". That, coupled with the fact that the Liturgy of the Hours reading for that morning was from the book of Job should have keyed me into the gravity of the situation.

In the movies, there's always this great emotional scene when someone is wheeled off to surgery, a long drawn out goodbye while walking with the stretcher. But it's much different in real life. There was no heads up, we consciously had to pause the nurses from administering the sedative so we could have a rushed embrace. Then she was hurriedly wheeled off, while I was left to find my way back to the waiting room. There I sat, praying and trying to stay otherwise occupied. I didn't leave the room, for fear of missing a page. An hour passed, then two. I was hoping for a simple surgery where they could cut the tumor right off. After two hours passed, I knew that wasn't to be. Three hours passed, then four. At that point, I was thinking the surgery was not going well, that it was long, drawn out and complicated. What if she had permanent injuries? What if she was paralyzed? What if..? By the time the doctor walked out to discuss the results with me, I was beyond exhausted. I struggled to retain the words he was saying: That it was a tough tumor, that it was attached to the nerves and had to be dissected rather than easily cut out. That he got most of it but the exterior remained. That he had kept dissecting until sensors began to register that the nerves in her arm were being affected. I thanked the doctor and waited for the call with directions to Caitlin's location in the Neurological ICU.

I arrived at the room just as they wheeled Caitlin in. Her eyes were barely open as she looked amongst the doctors and nurses until she saw me in the room and smiled. She whispered something to me: "Bye, Felecia". Having no idea what she was talking about, she repeated herseIf several times until I remembered she had "named" the tumor Felecia. After a few minutes she began to become more and more lucid, and asked how everything went. My stomach was in knots as I relayed they had gotten most but not all of the tumor - I didn't want her to be upset at the news.  Doctors came and went, always looking at her incision, and indicating it looked good. To me, it was totally gruesome and I had no idea how anyone could take a look without grimacing. We had awesome nurses, and were eventually moved to the Spinal Ward for further recovery.

This brings me to one of the more odd yet difficult complications we encountered: Caitlin was still breastfeeding Damian. Which meant that though she had pre-pumped milk for him at home, she had to continue to pump to keep up her supply. Initially we had assumed that of course the hospital staff could help, but this was not the case. Coupled with the fact that Caitlin could neither sit up, nor use her arms and hands meant that I had to pump her every few hours, half an hour at a time. We had to calculate which bags were tainted with medications and needed to be dumped, and which could be stored over ice. This also meant that I couldn't just come and go from the hospital easily to help at home. 

And indeed, at home the kiddos were struggling. Jordan and Rosemary's behavior was bonkers as mom and dad weren't around. Everyone seemed to have a bad cold. Then Damian developed a croup cough, and had to be driven to Fairfax Hospital ER. There he and I sat, packed in with dozens of other children with similar RSV illnesses. Damian was a trooper, and after a few hours they administered some steroids to him while we waited on a bed in the hallway. It was busy and noisy, and I recall in the room next to us there was a man - probably in police custody - yelling and sobbing hysterically. Gladly, we were discharged a little after midnight. Sweating profusely, I carried Damian and all his gear back to the Spinal Ward. Visiting hours being over, we had to wait outside several minutes for special permission to bring him upstairs. After a quick visit with mama, I lugged him and all his stuff back to the parking garage, only to discover the car battery was dead. A guard was able to come by and jump start the battery, and I exhaustedly arrived home at 3AM for a couple hours of sleep. It was good to see the kiddos for a bit the next morning, but it was all too short as I had to hurry back to pump Caitlin again.

Caitlin was discharged from the hospital after about a week and a half, and like everything else it was both a blessing and a curse. On one hand, it meant she was making progress. On the other, it meant that I was now wholly responsible for caring for a spinal surgery patient who could barely walk, let alone use the bathroom, climb the stairs etc. Getting her inside the car outside the hospital was an ordeal in and of itself. After the long (and slow) drive back, my dad and I aided Caitlin up the walkway, through the door and up the stairs to bed. All was well for the night, or so we thought.

Caitlin's blood pressure runs pretty low. Couple that with meds that lowered it even more, and that meant she was liable to pass out anytime while moving. Case in point, that first night I helped her to the restroom, at which point she promptly passed out on the commode. There I crouched, holding her shoulders with my arms, and supporting her head with mine. No phone within reach, my mind racing with the terrible things that could happen should her neck shift the wrong way or she fell. After a minute she regained consciousness enough for me to run to get my phone. I dialed 911, then just crouched in the same position and prayed over and over. We heard the sirens wail, turn into our neighborhood, then pass right by our house to continue down the street. After re-dialing 911 to let them know they had missed our house, the crew finally arrived, came upstairs and were able to help Caitlin off the toilet and back into bed. Declining to be taken to the hospital, we thanked them and off they went. The kiddos slept through it all, including little Damian in the bassinet. We laid down for what little time we could, exhausted. 

And that's the way it was for the next couple weeks: I was responsible for the feeding, wiping and bathing of everyone in the house. Everything was hard, sleep was interrupted by the medication schedule or bathroom trips. Daylight was spent hovering between child meltdowns and attending to Caitlin. My wardrobe became undershirts and gym shorts, my world was the house. I longed for things so simple as going for a walk, taking a shower or mowing the lawn. Silly, but I likened the experience to this: getting dragged under an 18-wheeler truck all day, then being released for a few hours at night only to hear the truck honking throughout letting you know it was coming for you again at daybreak.

Then hot one morning, I awoke to find our HVAC system had failed. I made a few rash decisions and paid way too much to have it patched before it failed completely a few days later. Caitlin was stuck in the hottest room in the house, and we couldn't easily move her. I didn't know what to do before two Seton families volunteered: one provided a brand new significantly discounted system, and the other paid for the difference. My brother in law brought a window unit to help us in the interim, and the poor baby-sitters never once complained about the heat.

That first checkup at Fairfax Hospital was hell: helping Caitlin down the stairs, then into the car. Then driving 45 minutes in the midday heat. The engine light came on at some point along 66, and I just couldn't bear the thought of what would happen if we broke down. At the hospital, Caitlin decided to use what turned out to be an extremely uncomfortable wheelchair, and as the minutes passed, she became increasingly worried she would pass out. We basically had to go up to the desk and plead to be taken back to just lie down. Thankfully they obliged, and after a few minutes of lying down she was feeling much better. We finished the appointment, and headed home.

Despite the difficulties, there were so many blessings: the work of great medical professionals, sitters and family members who helped with the kids, friends and coworkers who brought meals or gift cards. Volunteer nurses who gave up their precious free time to help with Caitlin's rehab. Some friends of ours started a GoFundMe and raised north of $27,000, not to mention the hundreds of cash gifts we received in the mail - all of which went toward medical bills and childcare. It truly felt like the ending of "It's a Wonderful Life". Normality sort of returned, as eventually I was able to get back to work, Caitlin was able to drive herself, and we got to attend family beach week in August.

We still have a long way to go, with more challenges ahead. Case in point, a few months back Caitlin alerted me to the very clearly printed word "malignant tumor" in her PT recommendation email from the surgeon's office. My heart sank. I did not sleep that night. The next day, the surgeon's office replied to Caitlin's email for clarification: "Sorry, clerical error." But very clearly, we are not out of the woods yet. I'd like to say Caitlin's back to normal, yet such normal things as unloading the dishwasher are very hard for her. I'd like to say it isn't still a roller coaster from time to time, yet many days I feel like I have to ask Caitlin if she feels well enough where I can even go to work.  A few days ago she had a relapse of pain that basically crippled her for Independence Day weekend, and it was a stressful reminder of how bad things had been and still could be. We have many more expensive MRI’s and consults in our future, and something could always turn up. And working from home presents its own challenges - all three kiddos are screaming outside my door as I write this.

But I say all these things because: we know that God is good, and we are beyond grateful for the legions of people He has sent to show His goodness to us. Thank you to all of you amazing people for the thoughts, words, works and prayers: We love you all, and very literally could not have made it to this point without you! And most especially: please continue to pray for Caitlin's complete healing and for perseverance as we face the health (and childrearing) challenges ahead! 

God Bless you all,

Bryan