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.

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