Seizures Suck

Life with Teddy is a roller coaster of emotions.

My day started by waking him at 4:45 for a sleep-deprived EEG. This photo was taken while I sprinted after him as he explored the hospital before his EEG, with him collapsing in fits of giggles when I blocked the stairs every time. (There's a reason I wore running shoes.)

Teddy had to say hi to everyone.

The EEG was miserable. We hate seeing him so stressed, the wires fell off even without him pulling them, and it'll be a miracle if his doctor can make heads or tails of it. But he perked up the moment he got to leave and got over the stress much quicker than us.

Now he's tired and craby, understandably. Yet I just signed him up for Miracle Leaugue, which is guaranteed to be a highlight of our summer.

In case you're wondering why the EEG was needed, Teddy had his first seizures that we've observed in 3.5 years last week. The seizures came a week after the hives, yet something was still off with Teddy with him waking up screaming 2 nights in a row before we saw the seizures. It makes us wonder whether he's had other seizures that we missed. 

The good news is the seizures seemed to reset him to where he was back to baseline pretty much the next day. The bad news is that we had to squeeze in labs and this lovely EEG in less than a week before his regularly scheduled neurology appointment tomorrow. 

Morale of the story: seizures suck. Oh, and I apparently don't like roller coasters now that I'm an adult.

It's Been 3 Years

It's been 3 years since this: 

I'm so grateful that Teddy is quite healthy despite his CDG-PIGN diagnosis. Unfortunately there are others with the same diagnosis who struggle with seizures daily, and we can celebrate milestones like 3 years since his last seizure. Seizures suck. They're scary. They can be life threatening. They can land us in the ICU (once is enough to realize it can happen again). They can rob our children of their skills and progress. Yet, unfairly enough, so can the medicines to prevent and treat seizures. It's a constant challenge to manage the seizures to help our children be their best selves, and we know we're lucky that Teddy's seizures are few and far between. 

In the next couple weeks I'll be sharing more about a really exciting research project, using science to explore treatment options for Teddy's diagnosis. I'm so excited about the possibilities, not so much to benefit Teddy but to help those who are more severely affected, who struggle each and every day with things that even we take for granted. 

But for now, we'll celebrate that it's been 3 years since our last ambulance ride, sleepless night in the hospital (as there have been other sleepless nights) and sheer terror. We'll take his smiles, sass and spunk any day over seizures. 

Epilepsy Awareness Month

 November is Epilepsy Awareness Month. Teddy's seizure disorder means he fits into this month, another one to celebrate along with Rare Disease Day and World CDG Day. Epilepsy gets its own month, though, and certainly is deserving since it affects a large number of people in significant ways. 

Yet, strangely enough, I don't think of Teddy as someone with epilepsy most days. I think there's a level of denial for me despite the fact that he's had multiple seizures. I think perhaps it's because the seizures are the hardest aspect of his diagnosis. 

I know I've written recently about how life with Teddy is hard. The developmental and cognitive delays are tough, particularly on some days. But every seizure stops our world for as long as the seizure lasts, and the aftermath lasts days, if not longer. There are few things more terrifying that I can imagine occurring than watching your child losing control of their body, becoming unresponsive and sometimes failing to breath. Then picture that happening periodically, unpredictably.

For us, we know that illnesses, particularly with fevers, can trigger seizures. That means we're hypervigilant during flu season (or a pandemic) and any time Teddy is ill. We're on alert, watching for a fever, watching for signs of seizures. It's common for Dave to sleep with Teddy when he's ill, just in case, because there's always that fear of a seizure while he's sleeping that we don't catch.

Teddy recovers from most seizures remarkably well, bouncing back with no loss of skills or apparent lasting harm. However, he's stopped breathing during seizures. He's had multiple seizures last more than 5 minutes. He's been intubated because either the seizures disrupted his breathing or the medication to stop the seizures diminished his breathing to the point that was necessary ... to this day, I'm still not clear because he never became responsive from that series of seizures until hours later when he was quite agitated to discover a tube shoved down his throat. 

We're used to daily life with Teddy, and we're grateful that seizures aren't a part of daily life for Teddy. For others with his diagnosis, seizures are an every day occurrence. Rescue medications for them are a weekly or monthly need, as opposed to our rare times with Teddy. 

But we know seizure activity can change over time. The medications that work so well may not always work their magic for Teddy. Puberty is tough, with all the hormonal changes, and tends to increase seizure activity. 

I pray to God that seizures never become such a regular occurrence that they don't' phase me. We celebrate the periods between seizures, yet acknowledge that more are likely. Generally, we say, "It's really going to suck when he has a seizure again." It's been nearly 1.5 years without a seizure, and we're so grateful for that.

So what can you do during Epilepsy Awareness Month, instead of ignore it like I usually do? Check out: https://www.epilepsy.com/make-difference/public-awareness/national-epilepsy-awareness-month There's basic information on what a seizure looks like and how to respond if someone has a seizure. That basic information can be critically important, yet it's truly easy steps. 

Wearing a Mask Isn't a Personal Decision

If you strongly believe that it's your right to choose whether to wear a mask during the coronavirus pandemic, then you might not want to read this. On the other hand, it might a good idea if you could read it with an open mind to understand our perspective.

Teddy cannot wear a mask. He simply does not comprehend that it needs to stay on his face and removes it the same way he does every pair of sunglasses or hat that we place on his head. It might stay on for a period of time, anywhere from literally a second to 30 or more minutes depending on the hat and whether it has a string for him to chew on. See, Teddy has extreme sensory needs that include the constant need to chew on something, so something covering his mouth is only going to end up in his mouth. And a potentially contaminated mask does not belong in his mouth. Or shoved onto my head, which is also realistic because he likes to place the items he removes on other people.

Teddy also took an ambulance ride to the ER due to strep throat. He had another ambulance ride and ICU stay for an ear infection and stomach bug. Any illness, particularly one that causes a fever, can trigger seizures. And sometimes, those damn seizures won't stop. If strep throat sends him to the hospital, a reasonable person can understand why we're extremely concerned about the risk COVID poses to him. We like to pretend we don't have a medically fragile child, but the reality is that he fits that label.

So where does that leave us? At home.

Pretty much, that's the only safe place for Teddy to play, which means that's the only safe place for AJ to play. We even have to come inside when our neighbors are playing outside when Teddy doesn't understand we cannot play with or near them. We've made a few trips to parks when no one else is there, with the plan to leave as soon as someone else arrives, hand sanitizer on hand for immediately afterward and 1:1 supervision to keep Teddy's mouth off everything. We've done bike rides and runs, but only in places where there's plenty of room to distance and/or limited people.

Teddy hasn't been in a store in 4 months. Before the pandemic, he was routinely in stores at least once a week because we took him along to run errands because he loves people (and trips to stores greatly helped improve his moods when he was crabby and driving us nuts). What would it take for Teddy to be able to go into the store again? Everyone who can wear a mask to wear a mask.

You see, we understand that for masks to be fully effective, both people in a situation need to wear them. Only one person wearing a mask doesn't offer full protection. But, the best we can hope for with Teddy is partial protection, and unfortunately we have to settle for that. Because we can't isolate him at home. He needs multiple therapies to help work on the skills we take for granted: communicating, dressing ourselves, walking and so much more. He needs to go to appointments for adaptive equipment like AFOs, braces that help him be so much steadier on his feet and prevent him from snapping his ankles with his bendiness.

This graphic shared by Philadelphia Public Health sums it up pretty darn well.

The issue of a mask comes to the forefront at these appointments. At his therapy appointments, his therapists all wear masks, most often the respirator masks, and sometimes eye protection. His physical therapist informed me today that she fields a lot of questions from even her family on why she wears a mask everywhere. She said I do it to protect my kids. I know the population I work with is vulnerable. This came up because I warned her that the person who does Teddy's braces doesn't believe in wearing masks, just as a heads up in case she refers other medically fragile families there.

When we went in June for the first fitting appointment, I was surprised and uncomfortable that no one was wearing masks. For the second appointment, Dave called to request the person who worked directly with Teddy wear a mask. He did, but he also shared his thoughts on the virus being similar to the flu and how masks aren't necessary with our childcare provider. We made the same request for Teddy's appointment yesterday, and again our childcare provider took Teddy to the appointment. She and AJ wore masks ... and earned another earful. This time it was questions about where was Teddy's mask and why Teddy wasn't wearing a mask. She simply said Teddy cannot wear one due to sensory issues, which this person should know because he's worked with Teddy for 6 years. She shouldn't have to explain or defend why we're requesting a medical professional to wear a mask when interacting with our son.

Wearing a mask isn't your personal decision, any more than the decision to drive intoxicated is your personal decision. Personal decisions are things that impact you: whether you get a tattoo, dye your hair lime green, eat ice cream for dinner or even wear your seatbelt. They impact you and your health, so they still impact others who care about you if you make negative choices that lead to becoming ill, injured or deceased. But they don't pose the risk to others and they don't take away the ability of others to be in our community.

It's been said by so many in different ways. Wearing a mask isn't about you, although it certainly keeps you safer. Wearing a mask protects others, especially those like Teddy who have the double burden of medical fragility and the inability to physically wear a mask.

I'm not asking for sympathy for our situation. I'm asking for a bit of empathy, which means you'll wear a mask in public. And it means I won't have to make special requests for you to wear a mask to interact with my son and then get the fifth degree.

Second Least Favorite Thing

I took AJ for his flu shot today, which he was dreading. As we walked into the room with the nurse, he announced that flu shots are "his second least favorite thing." That prompted me to ask what his least favorite thing was, and the nurse began guessing. She guessed cleaning toilets, laundry, dishes, and vacuuming before AJ interjected, "It's my brother having seizures."

Well, then, yep, that's my least favorite thing as well. That stopped both the nurse and me in our tracks as we agreed that's definitely not a good thing and that the flu shot isn't as bad as that.

I'm often amazed at what pops out of his mouth and how insightful and connected to his brother he is. I was also amazed that the nurse asked if he wanted to pick out a sticker for him and Teddy. I did a doubletake and asked if AJ had said his brother's name was Teddy or how she knew Teddy. I might have inquired, "Does Teddy's reputation proceed him?" She laughed and said that she remembers kids' names and faces from all our visits, and shared that Teddy and AJ were some of her first patients. She then shared that she's loved watching Teddy grow through the years, learning to stand and then walk and that his progress has been amazing.

It was one of those little things where I never quite realized how much she knows and cares about our children, and it was worth the tears for the flu shot.

I'm Going On a Trip, and I'm Taking ...

Remember the game where you list all the things you're taking on a trip? I think there's different versions where people have to guess what the secret is to how to pick what you're taking or you have to remember what each person is taking. Here's my version:

I'm going on a trip, and I'm taking:

• Legos
• Magnetic toys
• Chewelry
• Pacifer
• Snuggly Blankets
• Books
• Lock puzzle board
• Pretend retractable knife
• Playdough
• Magic sand
• Bristle block stackadoos
• Wooden puzzle toy
• Mouse and cheese string toy
• Lacing shoe
• Jar of empty thread spools
• Roll of yarn
• Buckle toy
• Tablet
• Two toy cars
• Magic markers and paper
• Singing puppy toy (I just added that to my trip pile.)
• Rubber ducky
• Old wallet
• Sippy cup
• Backpack with stuffed animals

Can you guess where I'm going for my trip?

It's a 24-hour inpatient EEG with Teddy. Tomorrow. I had a legitimate nightmare about this a week ago and have been doing my best to avoid thinking about it. I don't sit well. I don't stay still. Neither does Teddy. Add in the fact that Teddy hates medical procedures and rooms and anything that remotely seems medically related, and I'm sure you can understand my nightmares.

Please, oh please, keep Teddy entertained oh magical suitcase of toys.

But, it's what we need to do to make sure he's at an effective dose of Keppra that there are no seizures. We were hoping to wait until school was done but realized we needed to do it as soon as possible after the last seizure in April. We want to make sure we're at a good place with his anti-seizure medication before we head halfway across the country on vacation. 

We've done several EEGs and even a sleep study at NIH (which was horrid, might I say, even if I wasn't the one who spent the night with him) but never a 24-hour inpatient one. The plan is to sedate him for the placement of the EEG leads instead of me holding him for 30 minutes or so while he screams hysterically while they place him. We're hoping that's the right decision that he'll wake up without being annoyed by all the leads and funky hat or at least less miserable than if he were awake for the process. I'm hoping the anesthesia goes well and doesn't have any side effects ... like seizures days later, which is what I think happened in April. To be honest, when they offered the option of sedation, I thought they meant more along the lines of a sedative to help him calm down and remain calm for the lead placement rather than full-blown anesthesia.

Once we get past the lead placement, then the challenge is to keep him occupied and content in a medical room for 24 hours. I'd be much less nervous if we were able to go the play room and wander the halls, but we need to stay in the room on camera for the EEG to be most effective. Hence the largest suitcase we own is almost entirely filled with toys.

Dave and AJ are coming up after school is done, so we're hoping that an hour or two of playing with AJ will be a nice form of entertainment for Teddy. AJ has already planned to save some of his tablet time to help Teddy play games on his tablet and is making him a treasure chest with toys to bring when he comes to visit. AJ really is the best big brother.

Then I'll head home with AJ while Dave takes the night shift because Dave is much better at getting Teddy to sleep than I am a saint. As soon as AJ gets on the bus Wednesday morning, I'll head back to Green Bay to relieve Dave. He'll go to work, and I'll finish out the EEG with Teddy. 

I'm crossing my fingers that he'll make it to school Wednesday afternoon, but I'm not holding my breath on that. We have a backup plan if we won't be home by the time AJ gets done with school. But, as I said to that person, if we're still at the hospital at 2 p.m. on Wednesday after getting admitted at 7 a.m. Tuesday, I'm going to need a lot more than you just watching AJ for a couple hours. Like sanity.

And as I told my mother-in-law, we have a suitcase of toys packed. We should be good ... at least until the anesthesia wears off. 

It needs to happen. It will likely suck. But it'll be done by sometime on Wednesday. 

Seizures Suck

*Sigh*

Seizures suck. A lot. Unfortunately, despite our wishes to the contrary, it seems like seizures will always be a part of life with Teddy. The frequency and severity might change through time, but it seems it will be a matter of "when" not "if."

The latest "when" was this morning. Teddy had a seizure episode that lasted probably at least 15 minutes. I'm guessing because although the entire seizure episode was captured on the camera in his room, I can't bring myself to watching the entire duration. The seizure occurred right around the time that Teddy normally wakes up, so I was blissfully unaware it was occurring because I assumed that Teddy was just still sleeping.

When I went in his room to get him, he didn't smile or respond normally to me. He looked at me, but that was it. He was chewing on his fingers, which isn't his norm. I removed his fingers and tried my fingers in his mouth. He chewed hard. I removed my fingers, and he still kept chewing on air. I thought it was really odd, so I went to grab him a chewelry and my phone to look back on the camera. He didn't attempt to leave his room with me, which is really abnormal.

As soon as I looked at the camera, I said, "We're going to the ER." And then I questioned that decision because he wasn't actively seizing. Then I wondered if I should give him his rescue med, but again he wasn't still seizing. Do I call his neurologist? Do I call his ENT because this is likely associated to his surgery earlier this week? Do I take him to the ER?

I opted for the phone-a-friend option and called Dave at work. Dave said his heart immediately sank and stomach tied in knots. Apparently me calling any time between 7 a.m. and 4 p.m. is a really bad omen. He supported my intial thought that I should take Teddy in to at least the walk-in.

The walk-in took us to the ER, which is only the second time this year that we've gotten transferred from walk-in to ER. (Hey, at least our health insurance carrier can't accuse us of not seeking appropriate care!) The ER doctor initially shared the opinion that I should have called his neurologist but ended the visit 4 hours later by saying that she was glad we brought him in because she felt he needed the IV of fluids to help with his heart rate.

Teddy snoozed in the ER with his eyes cracked open. Never know what someone might do otherwise.

I was glad because he was where he needed to be to get the care necessary. The ER team took care of coordinating everything with both his neurologist and ENT to figure out a coordinated care plan. I still hate being in the ER, especially with all the memories from December. I hate that I get compliments from the nurse (multiple times) on my ability to hug Teddy to restrain him while drawing labs and inserting IVs. Apparently my time at NIH has made me a pro at physically restraining my child while he screams for medical procedures. Not something that makes me feel like a great parent ... but it's better than sitting in the corner feeling helpless while watching others struggle with the same task.

Apparently Teddy didn't like the recommendations I got just yesterday from his neurologist on how to gradually increase his anti-seizure medication, Keppra. (That increase was due to the seizure activity captured at NIH during the sleep study in January ... just now figured out what to do with that information.) Instead, we went from 5 ML to 8 ML daily in a single day. In fact, Teddy got 7 ML of those 8 ML within a couple hours this morning, which left him a bit moody and tired to say the least.

This also means that we won't be delaying the 24-hour inpatient EEG that we were told to schedule once his Keppra was fully increased. I was hoping to delay it until summer to avoid missing school, which was fine per the neurologist's office yesterday. Not so fine today ... even if his neurologist was OK with waiting, we're not. I'll be calling next week to get it scheduled for early May once he's been at this dose for a few weeks, which is what it takes for the levels to build up within his system. I was postponing that partially because of school and also because I wasn't in a hurry to endure the process of hooking him up for an EEG (see the screaming hysterically while we restrain him for medical procedures references above) nor was I optimistic about how well it'll go to keep him entertained and contained for that period of time. Maybe this is God's way of forcing my hand on this ... but the last time Teddy was scheduled for a 48-hour inpatient EEG, he seized uncontrollably and ended up in the ICU to avoid it. (OK, he didn't do that intentionally, but that episode did get him out of the EEG.)

He better damn well not do that again to avoid this next one.

I hate seizures.

The Time My Husband Gave Me a Panic Attack

Yesterday I got the following text from my husband:

Teddy took another ambulance ride to Childrens

Now, picture only seeing the text, "Teddy took another ambulance ride to Childrens (Hospital.)" That's the text from Dave that I got on my Smartwatch yesterday afternoon. I was in the basement putting away things from my friend's baby shower at my house. I immediately ran (which I'm not supposed to do on my stress fractured tibia) up the stairs while screaming, "No, no, no!!!!" I dived for my phone to get more information and saw the picture.

My immediate reply text to my husband was three words. One was "you." The other two were for mature audiences, only but they rhyme with ducking rastard. (I did apologize a few minutes later once I could breath again.) My two closest friends were still at my house from the shower and were asking what was wrong as I ran through my house screaming. I replied "Nothing" and tossed my phone at them to see the text.

Then I went back to the basement, curled in the fetal position and sobbed for a few moments while reassuring myself that Teddy was indeed fine and everything was OK. I went back upstairs and apologized to my friends for completely freaking out.

I'm not surprised that I had such a visceral reaction because I had similar experiences after I lit myself on fire. There was a time when I was in the same room as bacon cooking where it sounded exactly like the grease fire that burned my hand. In an instant I dove under the kitchen table and hurled myself into the bathroom. There's a whole lot of mental and emotional trauma from our experience last month still for me. I had known that, but yesterday confirmed that without a shadow of a doubt.

I'm actually hoping that yesterday was one of those moments that helped me process more of the baggage that is still hanging around from last month. I know Dave meant the text as a joke, and I would have been able to roll my eyes at it had I seen the picture with the text. I'm just glad he sent the text when only my two closest friends were here instead of a houseful of 20 people who I barely know to witness me wig out.

Today I can see the humor in my reaction to what was intended as a humorous text. I'm still not sure there's a morale to this story. Maybe that Dave is still alive and didn't need an ambulance ride of his own after sending that text message?

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.

Are You Feeling Brave?

That was the question posed by Teddy's neurologist at his appointment last week, after he greeted us and asked Teddy how he was doing.

Seriously, he is the best neurologist. Even when our appointments are months or even a year apart, he walks in and greets each of us by name. He talks directly to Teddy and then uses his parrot Jabber to help with his examination of Teddy while checking his belly for Tigger and Pooh Bear. He's approach is amazing, not to mention that he knows his stuff and can explain things to us in a way that makes sense without making us feel stupid.

The reason for this neurology appointment was to determine whether we wean Teddy off Keppra, his anti-seizure medication. We had discussed it at his appointment in May but wanted to hold off past our 3-week vacation to the remote parts of our country. Now, in the midst of cold, flu and every other bug, we were faced with the decision.

Teddy hasn't had a seizure since June 22, 2015. That's a long time, which means perhaps his body has adjusted to be better able to handle that things (like fevers and illnesses) that caused seizures in the past. Or perhaps any seizure activity is simply prevented by the Keppra. The only way to know is to remove the Keppra and do an extended EEG to see what's going on inside that mind of his. (If only! At least the EEG is designed to see if seizure activity occurs.)

We decided to be brave, with a plan to wean him off Keppra gradually over four weeks. After one week of no Keppra, then we'll head in for ideally a 48-hour EEG. We'll be in the hospital basically for as long as Teddy will tolerate it. A standard EEG has a response rate under 50%. A 24-hour EEG has a response rate around 80%. A 48-hour EEG has a response rate around 93%. EEGs done at home have so much additional feedback that they aren't considered nearly as accurate.

Of course, when we got home from the neurology appointment, we discovered Teddy had a fever over 100 degrees. I think God has a sense of humor. Teddy stayed home from school that day but rallied to be well enough to head to school Friday. Saturday he developed croup. Seriously, God either has a sense of humor or is testing our resolve.

We will continue with the plan to discontinue Keppra, but we're waiting a few more days until he's over this crud. Then time will tell ... but I can't deny the thought of another seizure is terrifying. I'm hoping and praying I won't be making that type of post for a long, long time. Like ever. But I'm enough of a realist to know that it likely will happen someday.

I still can hope someday is a long time in the future.