The Nightmare Before Christmas

This has nothing to do with the holiday show and everything to do with our real life in the days preceding Christmas. It's been a week since we were discharged from the hospital. Since Teddy is back to his smiling, happy, mischievous self, now I can share the lengthy details with the many people who were praying and keeping Teddy in their thoughts.

Teddy had Christmas at the Barn at  his horse therapy place in Green Bay December 19, so we headed up as a family to enjoy rides for the boys, cookies and a quick visit with Santa. Dave was home recovering from the stomach bug but feeling well enough to go that afternoon, and my mom was in town to watch the boys the next few days while I had work and medical appointments. We watched both boys ride their horses, with Teddy grinning the entire time to ride Maverick with a police officer as an escort nonetheless. (The local police department partners with this barn for their equestrian patrol, so the officers were volunteering to walk alongside riders.) Teddy even smiled and stood next to Santa, which was nothing short of a Christmas miracle as we joked.

Teddy smiling with Santa ... a bad omen apparently.

On our hour-drive back home, I noticed something odd with Teddy's breathing and turned around to look at him. As I turned, my mom, who was in the backseat with the boys, thought I was checking to see if Teddy was sleeping and said, "He's awake." As soon as I saw Teddy, my response was, "He's seizing." (OK, that's slightly edited to remove whatever expletive came out with that statement."

After 2.5 years without a seizure and one day fully weaned off Keppra, his anti-seizure medication, Teddy was seizing. Dave and I both had often said that the next seizure would suck because it had been so long, but we had no idea how much the next 48 hours would suck.

Teddy's past seizures all were less than 2 minutes, although they often felt much longer. After probably a minute of seizure activity, I gave my mom and AJ the task of counting slowly to give us an approximate seizure length. Dave exited the highway as soon as he could, and I stripped Teddy out of his coat with him still seizing since every other seizure was accompanied by a fever. My dumb idea was to take him inside the store nearby, so I could have light to see whether his lips stayed pink or started turning colors and to better monitor him instead of using the dim lights of the vehicle and cell phone flashlights. Dave suggested I hop in the backseat while we keep driving toward the local ER, which was still a good 25 minutes away.  At some point, while Dave was on the phone with the neurologist's office, the seizure finally stopped after at least three minutes. And then, while he was still on the phone, Teddy started seizing again.

The drive from Little Chute to Oshkosh consisted the following:

• My mom and AJ counting until I realized it was pointless because the seizures weren't stopping.
• AJ questioning Dave as to whether he was driving too fast.
• AJ saying, "I don't want Teddy to die."
• Me holding Teddy's hand encouraging him to come back and telling him we were right there.
• Me cursing under my breath and telling Teddy to breath because there were times I wasn't sure that he was.
• Talking to the on-call neurologist who told us to go the the ER in Green Bay (thinking we were still there).
• Me telling Dave to find the nearest ER and then determining that Teddy was still breathing that we could continue to the one in Oshkosh.
• Applying ice packs to Teddy and gathering what was needed in his diaper bag.
• Having AJ sing songs to make Teddy happy (and get him to stop saying he didn't want Teddy to die). 
• Wiping phlegm-filled drool from Teddy's mouth that just didn't stop. It was almost as if I could pull the phlegm from his mouth. 

At the ER, I tumbled out of the vehicle with the diaper bag on my back and Teddy limply in my arms. We checked in, after waiting for the person in front of us to finish, and I tried to sit Teddy in a chair to see how he was. He couldn't sit up because he was still seizing, and a nurse was up to get us within a minute.

The next couple hours are both a blur and moments that are forever etched into my memory. Dave was in and out of the room because he dropped my mom and AJ off at home and then made three trips back to our house to first pack an overnight bag and then go back for things we had forgotten. Dave's folks showed up in the ER, having made the drive down from Green Bay.


At the ER, they gave Teddy lorazepam to stop the seizures because he was at roughly 30 minutes of seizure activity. Teddy went from being unresponsive in a seizure to unresponsive but hopefully not seizing. The ER team wasn't certain whether the seizures had stopped or whether the lorazepam was masking the signs of the seizures, so they administered both Keppra, his usual anti-seizure medication that he had just stopped taking, and another more potent anti-seizure medication. Somewhere early on in the process, the seizures or the anti-seizure medications or some combination created issues with Teddy's breathing. He was breathing independently, but he wasn't exhaling enough CO2. Teddy was suctioned multiple times to pull the phlegm and junk from his mouth and airways. The team attempted bagging him for about 15 minutes, along with a nasal oxygen line and an oxygen mask in different combinations. None of that was sustaining the numbers where they needed to be, so the team intubated Teddy, which required another dose of lorazepam he still had enough response within his body to naturally fight a tube being crammed down his throat.

Never again do I want to see this sight.

It wasn't quite like an episode of House where the team cuts a hole in Teddy's neck, so he can breath, but it was as close to an episode of House as I've ever been. I counted 6 people actively working on Teddy at one point, with a few more on the edges of the room. Teddy was transferred to a larger room in the ER to fit all the people and equipment. Teddy continued to suctioned, even after he was intubated, which required multiple people to pull him from the ventilator, suction him quickly and hook him back up to the machine that was breathing for and with him. He had a respiratory therapist (I learned a new occupation that night) by his side the entire time, along with an absolutely fantastic nurse named Chris. Chris interacted with Teddy as though he were awake and responding, apologizing for all the invasive procedures like the catheter to do a urine sample and the IV that he nailed on the first attempt. (I suppose an unresponsive, limp person is easier than a wriggling child.)

This is some of the chaos from the procedures done on Teddy. No time to be neat.

At some point in there, the tears came for me along with the non-stop prayers. We were told we'd be transported to the ICU in Milwaukee, more than an hour away, which clarified the significance of events (not that having a machine breath for your child isn't pretty clear on its own). I got my own box of Kleenex to wipe away the snot. I moved from beside Teddy's bed to sitting on the foot of his bed, holding his hands and rubbing his legs, to be out of the way of the medical team but near him. I rode on his bed as he was wheeled to his new room and then again to have a CT scan done. I remember his nurse Chris donning the lead gown to continue breathing for Teddy while the CT scan was done. (Seriously, that man was the best nurse Teddy could have had.) When Dave was there, I headed to the bathroom to sob for a few moments, splash some water on my face and put on my game face with an attempt at no more tears. I had hugs from at least two different nurses, assuring me that we did the right things and Teddy was where he needed to be.

I remember saying to Dave, "This isn't supposed to happen to Teddy." It may sound horrible, but other children with this syndrome have seizures on a regular basis. They're the ones in my prayers as these horrid seizures happen that require immediate medical intervention. It wasn't supposed to be my child that needed my prayers and those of everyone else.

After around 3 hours at the ER, the transport team from Children's Hospital in Milwaukee arrived. The team consisted of an ambulance driver, respiratory therapist and RN with a full arsenal of medications and equipment. It took at least 30 minutes for the teams to coordinate Teddy's care, which was fascinating to watch. I admired the grace and helpfulness of the local team who had responded during crisis to make sure the expert pediatric team had everything needed to transport Teddy, who was now fairly stable.

There's a lot of stuff in that backpack ... and on that gurney.

I rode in the front of the ambulance, staring out the windows at the night sky and building lights. I chatted with the driver to keep my mind occupied and trusted that Teddy was essentially sedated with the additional dose of lorazepam given to him for the ride. No lights and sirens, no speeding. Just a routine trip for that team but not for us. Dave followed with his folks in a separate car, and they arrived in Teddy's room within 10 minutes of us getting into the room. The transport team updated the team at the Pediatric Intensive Care Unit (PICU). Different nurses, respiratory therapists and doctors took over from the transport team. The on-call neurologist talked with us in the hall around 11:30 p.m. He asked about previous seizure history, and I replied that Teddy was predisposed to seizures due to his rare genetic disorder. He asked which disorder, to which I replied, "Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1." He looked at me for a moment and said that it must be rare. Yeah, I don't blame him for not having any clue what I was saying. No one expects that mouthful after being called in at that time of the night. I had to repeat his diagnosis twice, slowly the second time, so the resident could write the entire thing down.

This monitor near Teddy's door displayed all his information.

Between talking to the neurologist and the resident and watching the team get Teddy set up, I felt like absolute crap. I wasn't sure if it was the stress, lack of sleep or the stomach bug that Dave had previously, but I curled up in a ball on the crappy pull-out couch and felt even more miserable for not being at Teddy's side. The rest of the night is truly a blur with snippets of Teddy covered in vomit with an upset nurse insisting that the tube needed to be removed then, not later when Teddy was more alert, because he wouldn't stop gagging on it and vomiting. She's my hero, although I couldn't fully appreciate her then because I was also vomiting thanks to the damn stomach bug. When the care team offered to have me climb in bed with Teddy, I immediately passed the job to Dave because I knew I'd be diving for the toilet. In between rounds of puking and fitfully sleeping, I saw nurses in and out of Teddy's room. I heard Dave struggle with the question of, "What's the most important thing to you?" I saw Dave's folks in the uncomfortable recliner and even-more-uncomfortable chair. I saw Dave always at Teddy's side. I texted updates to my family and posted updates for our PIGN group on Facebook in those few moments after each round of puking where you feel better momentarily.

I never thought we'd end up here.

As the sun rose Wednesday morning, I felt hopeful that the worse was past. Yet Teddy remained lethargic, uncomfortable and just miserable. My aunt who lives in Milwaukee arrived that morning like a ray of sunshine with good coffee for Dave's folks, comfy leggings and Tylenol for me, pacifiers and a singing toy for Teddy and OJ for Dave and donuts and snacks for everyone. Even her presence couldn't get Teddy to smile. At rounds the team agreed to remove all his monitors (despite the shock of his nurse) in an attempt to make him more comfortable and less miserable. That gave Teddy a bit more mobility, but he couldn't do anything with that mobility. He was a complete rag doll, unable to even support himself sitting up for a moment. He began vomiting, either due to the anti-seizure medications he was given or the stomach flu.

A picture is worth a thousand words.

Teddy  had visitors because he happened to be there when the local professional basketball team, the Milwaukee Bucks, were doing their annual holiday visit. Teddy got a stuffed animal from two players, including one guy who was 2 feet taller than me, but he could have cared less because of how miserable he was. The two-hour nap he took did wonders for me because that two hours of sleep helped me to feel more like a human than a zombie. Dave and I alternated turns of getting puked on to the point that our nurse started a load of laundry for us to get us clean clothes and Teddy's favorite blanket cleaned for the night. My aunt returned later that afternoon and finally coaxed a smile out of Teddy around 5 p.m. That was the start of the return of Teddy.

Best dad ever. Teddy liked to push the TV buttons with his feet.

It seemed that initially the doctors were ready to discharge Teddy, but we advocated that he stay until he could hold down liquids and ideally solid food. That meant we were spending another night. Dave's folks left with our blessing and encouragement, and my aunt ran to get Dave his favorite sandwich from Portillos because his appetite was finally returning from the stomach flu. My cousin and her fiance stopped by for the final minutes of visiting hours, and we settled in for what we expected to be a long night of Teddy fighting sleep and all the monitors.

In one of the most advanced pediatric hospitals, this giant yellow flashlight is what they use rather than a penlight.

The night went better than we expected with Dave and I alternating shifts with Teddy. The advantage of sleeping with Teddy is that he was warm and his bed was more comfortable than the pull-out couch. The disadvantage was that it meant your arm fell asleep. I shamelessly stole Teddy's new fleece blanket when I was on the couch because he certainly didn't need it. Around 5:30 a.m. Teddy decided he didn't need to be monitored anymore, so he began the endless cycle of pulling off every monitor attached to him until they removed them for the day around 7 a.m. We knew we'd likely get discharged that day, but we had to entertain Teddy until rounds happened around noon. We got him some breakfast, and he held down yogurt, oranges and some Cheerios. He continued drinking apple juice, building on the 4 oz. he had drank overnight.

Plotting his freedom.

We got a wagon brought to the room and wandered the halls. We had tried walking the halls, but Teddy was still far too unsteady for that. His nurse from the previous day asked if he was back to his drunk monkey self, which we had told her about as his usual walking. Dave's reply was perfect, "No, he's more like a drunk monkey on St. Patty's Day." That got a chuckle from all the nurses.

I like this goal better than making Teddy comfortable.

With Teddy back to flirting with the nurses and smiling at them, things were looking far better. We were getting discharged with an emergency rescue medicine to stop seizures, so we watched a tutorial on how to administer that. Child Life came to drop off goodies for Teddy and took him for a short wagon ride while we finished the video. Around 1 p.m. Thursday, less than 48 hours after the chaos began, we were discharged. Teddy downed his smoothie before we left the hospital and his cup of water before we got out of the parking ramp. He mowed down on pretzels and fruit snacks like nothing ever happened, then snuggled up with his pacifer and dozed to sleep.

The wagon ride to freedom. Sad to see so many rooms decorated for the holidays.

It took the rest of Thursday for him to slowly improve his coordination, whether due to the seizures themselves or the medicines to stop and prevent them. He was extra sleepy and pretty crabby until another nap and then a fun visit from his friends and my dear friend. That visit was exactly what we needed with some Christmas presents as entertainment and children to play with and a bit of the perfect reality.

A happy, hungry boy leaving the hospital.

The question the neurologist had asked us when we were making the decision to wean Teddy off his Keppra was, "Are you feeling brave today?" We said not particularly but still felt it was the right decision. At the ER we both looked at each other and said that we weren't feeling so brave anymore. (I just reread that post from November and snorted. A couple times.)

I know this post is incredibly long, but it's a bit therapeutic for me. This 48-hour period was easily the worst of my life. When I returned to the ER today with Teddy to drop off thank you notes for the entire team and his nurse in particular, along with candy, the receptionist remembered us. I said her face looked familiar, but parts of that night were a blur. Her response floored me, "That was a very scary night for all of us." I knew it was a terrifying ordeal for us, but that statement makes me think that things were even worse than I had known from my non-medical perspective.

I'm beyond grateful for all the support, prayers and love for our family. That, my friends, will be the next post on another day.