Eleven Days and Counting

We are on day eleven of our hospital stay for Ben’s spinal cord surgery. The average length of stay for his particular type of tethered cord surgery is 4-6 days, but we don’t tend to do things the easy way around here. I’ve posted occasional updates on social media, but will highlight some of the specifics here – mostly so I will remember!

Despite some intubation hiccups (surprise, surprise) Ben’s surgery went well. He was kept intubated and on a ventilator for three nights in the PICU (pediatric ICU) to keep him completely flat so his back would have a chance to heal. Staying intubated is not standard procedure for a tethered cord release, but was done because of Ben’s dangerous airway. A nurse sat a few feet away from the foot of his bed 24/7 and would jump up to give him more sedation meds as soon as he began to stir. And by stir, I mean violently shake his head. At some points there would be three of us holding him down until the meds kicked in. My most helpless moment came when watching Ben’s oxygen plummet from an obstruction in his breathing tube. Then seeing a team of nurses ventilate him by hand and suction out three mucus plugs. Just a day in the life of a PICU nurse, but I could live without ever seeing that again.

Extubation (removing breathing tube) was our next big obstacle because Ben needed to breathe successfully on his own after days of being heavily medicated. His tiny trachea struggles even on good days, so extubation was no joke. The PICU team did a great job of setting him up for success and it went well. Whew.

The next hurdle was getting him through withdrawals. Our poor guy had bad tremors and nausea that took two days to get under control. During the post-ventilator medication game, which involved steroids for his airway, and pain/withdrawal symptom management, we found out Carter fell and ripped open the palm of her hand. Daniel rushed out to meet his mom at Urgent Care. Carter ended up with thirteen stitches and has needed three additional hand-related appointments during our hospital stay.

After four days in intensive care, Ben was moved to the neurosciences floor, where we spent several more days. As we were getting ready to be discharged and applying Ben’s final dressing, we discovered the incision was bulging from a cerebrospinal fluid leak. Ugh, the dreaded leak. The neurosurgeon was called out of a surgery to come check on it and he declared we must go back to the PICU for sedation, a compression wrap and diuretic. I almost fainted (really) when he said “If we have to keep him intubated for two weeks to get this under control then that’s what we will do.” Thankfully, his nurse practitioner was as cool as a cucumber and talked me down from passing out. ENT said it was safe for Ben to be taken off his steroid, which interferes with healing, and thankfully he hasn’t needed it since.

So here we sit. Doing everything to avoid another surgery which would start the entire cycle of airway management and healing again. The fluid on his back has significantly decreased and he came off of sedation today. We hope to be out of here on Monday – only three more nights! Our kids are missing Ben like crazy and we are exhausted. So many people have stepped up to take care of us, for which we are incredibly thankful.

Despite some curve balls, we are what the staff refers to as a “planned stay.” This is so very different from those who are here otherwise. Don’t get me wrong, there is grief in learning the original diagnosis and fearful anticipation of a dreaded surgery. The past twenty-two months have been a roller coaster ride. But, our particular stay in the pediatric intensive care unit means we are a step closer to resolution. One more surgery behind us. Something that was wrong with Ben’s little body was made right. It’s not lost on me that other parents did not have their PICU stay already marked in the calendar. But there is such camaraderie here. Passing each other in the hallway with a nod of solidarity. Being excited for the families going home after six days or six months – seeing the relief on their faces, with a tinge of survivors guilt and a timid wave goodbye. There’s a collective fear in the waiting room with new arrivals anxiously awaiting results, and the heaviest grief with those who just received sad news. We don’t know the details of what brought each other here, or even each other’s names, but we know we are in it together.

Surgery tomorrow, but not the one we expected…


This photo included because A) Ben had the best night of his life on the dance floor and B) to remind myself our hospital selves are not our permanent selves.

Complete Tracheal Rings Update: We’ve been to visit the airways team at Cincinnati Children’s twice since my last update and have another date on the books for early January. The doctors feel Ben is on the very edge of needing tracheal reconstruction, but the surgery is so dangerous and the recovery so difficult that they want to continue to wait and watch. So that means we will continue to return to Cincinnati for bronchoscopies every 3-5 months for the foreseeable future. I’m so acutely aware of Ben’s stridorous breathing. It’s nails on a chalkboard to my ears. But, opening his little chest – that’s already been opened for heart surgery and has scar tissue and sternal wires – to reconstruct that little trachea is no small feat. So medical trips are our new norm and I’m learning not to put our life on hold “until we find out what Cinci says.” It’s terribly hard to be at the mercy of the hospital’s schedule. I had to miss Carter’s kindergarten graduation during our May trip (many tears shed over this) and leaving town during the first week back to school in August was not easy. We were told to come back in December but I asked to have it pushed to January. I do have my limits.

In the meantime, and the real reason for a new blog post, is Ben’s recent diagnosis of a tethered spinal cord. A few months ago, we learned Ben’s incontinence is not just part of his developmental delays, but he truly has no control and may actually be in pain when he urinates. This finding led to a spine MRI, which showed a spinal lipoma, small cyst and tethered spinal cord. A normal spinal cord moves freely within the spinal column. As the name suggests, Ben spinal cord is attached (tethered) near the base of his spine and therefore being stretched as he grows. Without surgery to detach the spinal cord, continued strain would lead to progressive neurological and motor impairments, including paralysis. Our neurosurgeon told us this ideally would’ve been repaired as an infant, and unfortunately Ben may not regain bladder function, but here we are with a five-year-old boy just thankful he’s alive.

During our August trip, the airways team and neurosurgeon agreed it’s safe for Ben to have spinal surgery at our local children’s hospital. Special precautions will be taken with Ben’s airways and an ENT will be on-call during surgery and recovery. Ben will likely spend 3 days sedated and lying on his tummy in the PICU to prevent cerebrospinal fluid leakage, then 2-3 more days recovering on the neuro floor. During Ben’s heart surgery in China, his caregivers were not allowed to be with him during his recovery in the ICU. Our little one-year-old Ben was all alone in the hospital! So we count it a privilege to sit by his side during this recovery.

Who knew so many surprises could come in one little package?

I’ll be posting updates on Instagram and hope to get in a blog post or two during our stay.

“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.” 

                                                                            ― Maya Angelou