Shunt Malfunction | Part 2

Zion’s shunt malfunctioned when he was 2-months-old, and he needed a second surgery to repair and revise it. 

This is part 2. Catch up on part 1 here.

Dinner was weird. I had Zion’s empty carrier car seat sitting next to me in the corner booth. But I had to keep reminding myself he wasn’t in it. He was in surgery. We didn’t know how long it would take, the surgeons said it would depend on where it had malfunctioned and what would need replaced. So I scarfed down my taco salad. I was unaware how hungry I was and I’m a comfort eater. Adam picked at an average burger and cold fries and kept up with updating our friends and family. It felt like we stepped back into our roles we had just played during his first surgery. We’d rehearsed this time, and it was familiar – what to do, where to go – but different. We waited while being covered in prayer and the peace did come. 

Once we finished eating we went back to the general waiting room which was really just a hallway right outside of neurosurgery. There were these big mirrored walls. A little strange, because really who wants to see their tired, worn and anxious self waiting for their loved one being operated on. I suppose the idea was to make the hallway seem bigger, less hallway-like. I headed to the bathroom, and when I came back our neurosurgeon, Dr. Dlouhy, was seated talking to Adam. The news was good, surgery went well. He dove into telling us the parts that were replaced and his hypothesis for why and how the shunt failed. It had gotten clogged by brain tissue and so they replaced the catheter and valve and stitched him back up – this time with his semi-circle incision extended on one end resembling a cane. Dr. said he thinks the valve setting was pulling too much fluid and pulled the brain tissue as well. Zion has a fully developed brain (which is great news!) so there’s more tissue to potentially clog the shunt (not so good). The new solution was to try a different valve setting: 2.0. He also dialogued with us about future scenarios, what we’d do if it fails again before he turns one, what we’ll do if he’s over one. He then said, let’s not get too far ahead of ourselves and gave us the go to see our boy. My mom and sister joined us and we walked down to Zi’s recovery room.

Zion was taken to the PICU, in a room with an infant bed that looked similar to our NICI stay. When we arrived, he was crying, still coming down off of anesthesia, but when he heard my voice began to calm down. I couldn’t wait to hold him and comfort him. He looked like he’d been through the battle. The yellowish iodine tinting his skin on his head and some of his chest, a larger bandage over his newly extended head incision, and a few nicks on his head. When I was able to hold him, I fed him a little bit and he even looked up at me with a smile. We were overwhelmed at seeing even a small smile after the long days leading up to surgery when he hadn’t smiled at all. It was clear that he was going to be himself again. My mom, sister and Adam surrounded the chair I sat in holding him as we stared down at this tough baby and praised God for His provision and guidance. There were some funny moments too, something about exhaustion met with relief makes you just the right amount of delirious. I tried using the sink in the room. I looked at the faucet with no knobs and waved my hands, thinking there might be a sensor somewhere. I loudly questioned, “is this some kind of fake sink?” Because that’s the logic I had at that moment. Chelsea laughed as she pointed out a foot pedal at the ground and we all breathed out laughter. We also noticed the “stool” attached to that same counter looked a whole lot like a toilet, which was a toilet.

It was getting late, so my mom and sister said their goodbyes and headed on their way. Adam and I got settled and comfortable – as comfortable as you can be when you’re sleeping in a chair. I wasn’t planning to sleep, really. I wanted to hold my son and feed him as much and as often as he wished. Adam slept on a couch in the room, and I believe got some sleep.

The nurses came in and out to check on him, he had the usual cords hooked up to him, but I could usually hold him through most of it. At around 6:00a, neurosurgery stopped by to check in, followed by some in-room X-rays. It seemed to take a long time and poor boy got really worked up. When all was finished, we were informed we’d be switching recovery rooms – to a less intensive unit. So we packed up and were escorted to our new room.

They didn’t warn us that our new room would be a shared space with another child. We were surprised, nonetheless, to walk in and see a mother sleeping in a chair with her baby lying in her carseat at her feet. 
Once it was actually morning, and the sun had come up, this mother and I chatted about what brought each of us here. She would be going home that day and had only been admitted to have her daughter’s feeding monitored, due to trouble gaining weight. Soon enough her husband and son arrived and their whole family checked out. 

With the room to ourselves, we wondered when we’d get discharged. We knew we had an MRI, yet, but after that we weren’t sure what recovery would entail. Eventually, we learned he would need to continue his antibiotics for 24 hrs post surgery, meaning we’d leave the following morning (Thursday) at the earliest. So we mentally prepared ourselves for one more sleep in the hospital and waited most of the day for his MRI to take place. Often during the day they are taking scheduled outpatient appointments so ours consequentially fell in the evening. Besides it being a long day, we were pretty content seeing Zion all smiles. He barely slept at all, he was too busy looking around, smiling and cooing. The change that had taken place since surgery was sweet confirmation that it had worked. 

The hardest part of the day was when Zi had to get a new IV put in. It is such a process on a baby that wants nothing to do with holding still and has the tiniest veins. I wanted to leave the room, not watch him suffer and just come back to comfort him, but I knew he needed me and I had to swallow hard and be there through the process – even if all I could do was let him hear my voice. This is a point when fear grabbed me and planted questions and doubts in my mind. Would this traumatize our baby? How will we go through this if he’s a one-year-old? A four-year-old? 

After 3 attempts in his small hands, with 3 of us holding him still, we took a break. My heart needed a break as much as Zi did. I nursed him and prayed for the next attempt to work. About an hour later, a nurse from the pediatric clinic came to try. This time she decided to put the IV in his foot. It started the same way, with his cries escalating and me trying to concentrate on holding him still while praying for swiftness. Finally, she got it. Thank you Lord. 

After such an exhausting few hours, I snuck in a quick nap while Adam hung by his crib. We were very careful around his IV, we couldn’t bare another episode of putting a third one in.

By late afternoon we had a new roommate, a sweet little girl, Allison, who had been diagnosed with Diabetes. Only about 15 months, she instantly reminded us of our friends’ daughter, Emsley. She was scared, as were her parents, after what sounded like a long first night in the hospital and finding out life-changing news about their child. We talked with them and sensed a lot in common, just that feeling of watching your baby go through something that you ache to take away, to take upon yourself. Being strong for them is hard. 

At dinner time, Adam picked up Wig & Pen pizza and onion rings and we popped in the family waiting room to eat. I walked back and forth making sure Zi wasn’t crying – the whole shared room dynamic was a little tough! After we finished eating it was time to try bedtime with two babies and four adults in one room, ha. Allison and Zion cried back and forth at each other, their own baby communication thing, I’m sure. And once one or both were asleep, it was bound to be a time one of our nurses were popping in to check vitals. At one point when Allison began to cry louder, Zi looked up at me with the sweetest lower lip quiver. It was like he was sad for her, full of compassion. Finally, Adam had the idea to put Zion in his carseat, that maybe he’d stay asleep in there. Winner. It worked like a charm. I think I even got a solid 4 hours in a row – a milestone when you’re sleeping sitting up in a chair, in a hospital! 

In the morning we all laughed at the events of the night and how any of us had gotten sleep was a miracle. We also got word that as soon as Zion’s antibiotic finished and they received the discharge paperwork from neurosurgery, we’d be on our way! We packed everything up and anxiously waited a little while longer.

We were on the road home by mid-morning. Getting to have Zion cord-free again was not something to take for granted. Coming home, settling back into everyday life felt comfortable, in a way. Sure, he had a bandaged head, we continued his doses of Tylenol and cuddled him more. But those days leading up to surgery were so hard, his inconsolable crying and anxiety of wondering what might be wrong. I said to Adam that Thursday, “he almost seems easy now!” Not your typical thought as a new mama of a two-month-old. It is true that trials produce endurance and God making us brave and reliant on Him. Circumstances change, and Zion is sure to go through some tough stages. We also aren’t promised this won’t happen again. So, Jesus is asking us to take one step at a time, not look 10 feet ahead with fear of what’s to come. Right now I am so thrilled to be Z’s mama, grasping each day and trying to hold the joy. Because I don’t know what’s ahead – and I don’t want to miss now trying to figure it out.

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