All about Harry, part 3: His surgery, the recovery, and the end of summer

August has always been a busy month for our family. My birthday, my brother's birthday, my parents' and grandparents' anniversaries, my and Noah's anniversary. And now my niece Evie's birthday (she's just turned one!) and Oliver starting kindergarten added two more big events to the month. The most stressful event this August, though, and one I hope never to repeat, was Harry's abdominal surgery.

I've never really been the kind of person who reacts to stress with panicky behavior or wildly flailing emotions. I have proven, however, to be the kind of person who internalizes stress, which later manifests as illness. I've also shown myself to be the kind of person who channels nervous energy into big projects. So has Noah. For instance, in the two days prior to Harry's surgery, we reorganized every single book in our house (a very big project; we're book people and have books in literally every room) and switched out Ethan and Oliver's dresser, thus requiring some furniture rearrangement.

In spite of all our organizational accomplishments, Harry's surgery still had to happen. 

The Morning Of

The hospital called the afternoon before to give us our arrival time: 6am. Good. First surgery of the day, no anxious waiting around, no time for anxiety bowels. My parents came over at 5:30, my dad to stay until the big boys woke up, my mom to ride with us to the hospital. 

And little Harry, absolutely no clue what he was about to experience.

The pediatric surgical area was spacious and colorful, yet calming. We checked in and were shortly called back to the pre-op area. Harry was tagged and assessed, we were given a little gown to put him in, and the team of doctors and anesthesiologists trickled by to go over procedures and whatnot.

Noah and I both had worried that the moment they wheeled his little gurney away, we'd lose it. Perhaps this is a common issue, because at our children's hospital, they don't wheel children away on gurneys. A nurse or doctor carries each child from pre-op, through the doors and down the hall to the operating room.

Harry's nurse and anesthesiologist both angled for the task (understandable), but in the end, the anesthesiologist won out. I'll never forget watching this highly trained physician in surgical scrubs slowly ambling down the hall, my little guy in his arms. Harry was gazing up at him, and before the doors closed, I saw Harry reach his little hand up and touch the doctor's mask.

Details I Didn't Know About Beforehand: #1

Partial names of all the children having surgery are displayed on monitors throughout the pediatric waiting area, in color-coded blocks. You can see who is checked in, who's in surgery, who's in post op, at any given time. While we were there, literally dozens of kids were having operations.

And then we just had to wait. We didn't really cry (I'll admit to watering eyes, though). The surgeon had said the procedure could take from 2-4 hours. In the end, it was just over 4 hours.

We went to the cafeteria for a bit, tried reading for a bit. Honestly, it didn't feel interminable. A nurse called us when the surgery began, and a few more times for updates throughout. Noah even spoke to the surgeon while she was operating (nurse holding the phone for her). The biggest surprise was when the surgeon asked if she could go ahead and remove his appendix; it looked normal but was right where she was operating. It would only add 2 minutes to the hours-long surgery and would save Harry from ever having appendicitis. So we agreed to it.

It felt weird saying, sure, take out one of my kid's organs. In reality, the appendectomy was way less weird and dramatic than the rest of the surgery.

After Surgery

Before we even saw Harry, we met with the surgeon. She had photos of the mass and various points in the procedure, which were enlightening. Because of the size of the cyst, she couldn't complete the surgery purely laparoscopically; she needed to make an incision below his belly button.

In her professional (read: minimally distressing) terminology, the mass was "impressive" in size. It was 12 cm by 6 cm, filled with fluid, lying against his kidney, the ureter from kidney to bladder, and his spermatic cord, with a strangulated segment of the bottom of the cyst extending down through a herniation and into his testicle.

She carefully, tediously peeled away those essential structures from the mass, closed the hernia, extracted the mass, and of course removed his little appendix. His belly was noticeably flatter, she told us.

She gave us the pictures to keep, told us that pathology would weigh and measure the mass and do a biopsy, and we'd have results within 5 to 7 business days. To her, it appeared consistent with lymphatic malformations—which are benign—but she admitted she'd never seen one in this location.

I was relieved the surgery was over and he'd come through it all well. I sat and looked at the pictures, at his little insides...the bowel, the mass, the pelvic floor, the stitched hernia...and actually took comfort in being able to finally actually see what was in there, to see that everything looked new and healthy inside his little body.

Finally, I was called back to the recovery room. I could be with him.

Recovery

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He wasn't under anesthesia, but he wasn't exactly conscious. His eyes fluttered. I put my finger in his hand, and his little fingers gently closed around mine. His breathing seemed ragged, but the nurse constantly monitoring him assured me it was normal. All his vitals were good.

Details I Didn't Know About Beforehand: #2

Though Harry had "come out" of his anesthesia, he was asleep or only partially conscious for the majority of the day and night afterward. Because he was under so long.

After awhile the orders came through that he could be moved to his room in PICU. Once we were in the hall, Noah and my mom were able to join us and ride the elevator together up to his room, room 606.

Details I Didn't Know About Beforehand: #3

Holding your baby is challenging, not only because he was in pain from the surgery, but because of the many tubes and wires in and around his little body.He had IVs in both hands, a pulse ox monitor on his toe, heart monitor (three separate stick-on things, a wire on each one), blood pressure cuff, and a catheter. 

The Hospital Stay

He barely ate for the next three days. The IV fluids kept him hydrated and receiving the proper nutrients. But I had to pump regularly because he couldn't/didn't want to nurse. On days two and three post op, he wasn't keeping down nearly anything he ingested. He had a low fever for most of the first day. Apparently, this is also normal after extended anesthesia and a long surgery. 

Details I Didn't Know Beforehand: #4

Now I understand why Ronald McDonald House exists. We live only 20 minutes from the hospital, but going home for a shower and fresh clothes was still a challenge. I was entitled to a meal at each mealtime since I'm breastfeeding, but Noah had to fend for himself. This gets expensive. Donated snacks in the Ronald McDonald House family room were clutch. I imagine having that room on-site, somewhere to still be nearby but also get a change of scenery, would be clutch for families in the hospital longer than we were. After just three days in the hospital, we felt cut off from the outside world. 

On the second day post-op, the surgeon ordered a suppository to try and wake up his little digestive system. Fortunately, it worked, and by late afternoon on Saturday, we were happily surprised to learn they were comfortable letting Harry go home, if we were comfortable with it, too.

Although he'd recently thrown up his dose of Tylenol, he had kept down breast milk. We were anxious to bring him home. Since his pain seemed under control—he'd only needed two small doses of morphine—we figured he'd probably actually do better at home, a familiar place, surrounded by his family.

Details I Didn't Know Beforehand: #5

Since kids can bounce back so quickly, Harry's pain was largely controlled by Tylenol and ibuprofen. He had two small doses of morphine when breakthrough pain happened. which was tough to watch. He never really cried much, but he was breathing quickly and shallowly and making little whimpering grunt sounds before he got the morphine. This child is a trooper.

Home Again

As we hoped, Harry did very well at home. He recovered quickly. He was sitting up for extended periods by the fourth day, and even gently bouncing in his Little Einstein play seat thing on the fifth day. 

One week exactly after his surgery, Dr. Sieren called with the great news. Pathology reported no concern for metastases or cancer. The mass was 100% benign. I was elated. I felt like some tightly-coiled spring inside me was suddenly relaxing and unwinding.

 The day we found out Harry was going to be okay.

The day we found out Harry was going to be okay.

A week after we got home, Oliver started kindergarten and Ethan started 5th grade. I'm still processing all of this.

True to form, the release of tension has manifested in illness: I've been dealing with the most intense lupus flare I've ever had, including a bout of pleurisy, which I've never had before. (Pleurisy is inflammation of the lining of the lungs, and for me it feels like a pinpointed sharp pain in my right shoulder blade with radiating soreness that I can feel through to my chest when I breathe deeply.) Fortunately, I've been on a course of steroids that relieve the pain.

We can all breathe deeply now, move forward free of the lurking fear, and for that I am so, so grateful.

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 The last day of summer vacation.