Sedation Dentistry

If you recall, Teddy's first Monday without school this summer was a hit. Literally. As in he hit his face on a curb and chipped out his 2 front teeth. 

That resulted in a trip to our regular dentist, followed by another visit a month later when the swelling was gone to attempt to repair them with laughing gas. The idea that would work is downright laughable, so we ended up with a referral to a pediatric dentist who does sedation dentistry. That visit last month led to Teddy being scheduled for dental surgery today.

Dave will not let me change his name to Theodork.

Sedation dentistry is the only way we'll get this work done, and everyone seems to feel like it's the best way for him. Tell him that as we have to check in, go through all the questions and then try to get him to actually sit on the bed ... all while he is asking to leave and getting more and more agitated. The team asked if we could get him on the bed, which obviously we can because there's 2 of us and one of him, and we're still stronger. But I'm sure it was a bit comical because he acted like he was superglued into his chair and then proceeded to wriggle like the bed was electrified to get off it. So, yeah, that was not pleasant for any of us. 

That's when they realized he needs something different, which I thought I had already covered with them that he wasn't going to settle down until they started knocking him out. They asked about one of us going back with him because they thought that would be less traumatic than ketamine. False. It's far easier to give him one shot that forces his body to relax and allows us to settle him on the bed, so they can wheel him back and put him fully to sleep. 

Once we explained that, he got the shot and crawled back in his chair. Then I carried him to the bed, where he fought for one or two more minutes before the medicine hit his system, forcing him to relax. While it's unpleasant to see him like that, at the same time we know it causes the least trauma because we just need to get this over with as no amount of soothing is actually soothing to him.

So now he's back getting his front teeth capped, his back molars sealed, a thorough cleaning and x-rays done to make sure there's nothing else to address while he's snoozing. Then we'll see whether he's tired the rest of the day or whether he's back to his usual energy level of non-stop movement.

 And hopefully it's another 10 years before we need sedation dentistry again, though I know that's too much to dream. 

It Took 10 Years ...

... but Teddy finally has his first broken bone. At least, the first one we've realized was broken because honestly, only God knows how many concussions he's had and if anything else ever was broken. I mean, there was the time we were certain he broke his nose, but that was just a ruptured cyst that resulted in a couple intense surgeries and some quality time with a good ENT doctor. 

Anyways, back to the current situation. A week ago Teddy was trying to load a 4x4 wooden post into the back of a UTV (think about as high as his head) when he dropped it on his bare foot. Dave carried him into the house screaming (Teddy, not Dave). He's not a big fan of ice packs (or bandaids), but we tried to apply ice, gave him Ibuprofen and snuggled him while we ate supper. He was still crying after supper, which meant it really hurt, so we headed to the walk-in clinic to get it checked. They did x-rays just in case, which went much smoother than I expected. Results were expected the next day due to the holiday.

The next morning he was limping, but he was walking on it (mostly walking on the side of his foot). So we knew it still hurt, but we figured it was just bruised. Nope, turns out the kid was walking on a fractured toe/foot. I say foot because the break is higher up in the toe bone, so it's what you'd consider the top of your foot in non-medical terms. The walk-in nurse who called with the results said to ice it (which he won't tolerate) and keep him non-weight bearing until he saw orthopedics. I believe I kindly informed her that without sedatives, there was no way to keep him from being weight bearing.

So the next day we sent him to school with a detailed note and his chair, noting that he'd still be walking and moving because we know Teddy but to please try to limit his activity and use his chair. We finally got his ortho visit scheduled for Friday (so 5 days after the incident) and confirmed with his primary care doctor that we could and should try to use the boot we borrowed from a neighbor. Up until that visit, while we tried to limit his activity as much as we could, he still proved he could walk, run and jump with a fractured toe. 

Fractured toe is not enough to slow down Teddy.

The irony is not lost on me that my last blog post was about saying farewell to our backpack carrier because less than 2 weeks later we had a child who was supposed to be not weight bearing. We used his 2 chairs that we have (one for transports at school and the bulkier fun chair at home before/after the bus). We put a trike in the house to encourage him to ride it rather than walk. And we carried him up the stairs every night and encouraged him to butt scoot down the stairs. So, the child carrier still would have been handy for the next 5 weeks in other words.

Ortho believes it's not completely broken all the way through and wants to have follow-up x-rays again in a week to be certain nothing's out of place. We discussed a cast but determined the boot or his AFO/shoe is sufficient, but he's not to bear any weight without that additional support. That means he's even supposed to wear it at night, which seems so darn miserable.

He's tolerating the boot really well, except for when he gets home from school and just wants it off. As long as he stays busy, he'll leave it alone. We also have tape to wrap it if needed, so he can't just remove the boot. Because we can't stand the thought of wearing the boot non-stop (and it does rub on his leg just because he never stops moving), Dave has been sleeping with him at night. That way we can forego the boot and just put it on right away when he wakes up before he starts moving around. 

It's still going to be a long 6 weeks (hopefully only that if all heals as expected), but at least we have one week done!

5 People

Five people.

That's how many adults it took to restrain Teddy while the poor nurse practitioner put 5 stitches in his chin. I think that was everyone working on urgent care on Christmas morning.

Nice chin gash on top of his prior chin scars.

And then later that week, he fell while playing near the treadmill. AJ, Dave and I all arrived at the same time to find him in a pool of blood. At first we thought he perhaps had cracked his chin early, but the stiches held. Instead, he had built nearly through his tongue.

In case you don't know, tongues bleed a lot. (All head wounds do.) But tongues heal remarkably well. We know this from prior experience since Teddy jammed a plastic hanger nearly all the way through his tongue a few years ago. We took him to urgent care for that, who looked at it and promptly sent him to the ER. ER looked at it and said, "Eh, it'll heal." 

Since this wasn't nearly as bad as the coat hanger incident, I wasn't too concerned. I still did call the nurse line to discuss the situation. I said that if they wanted a peek at it, they'd be able to see it when we came back to get his stitches out. *Insert facepalm emoji here.*

Moral of the story? I'm not sure. Heads bleed. It takes a lot of people to restrain Teddy. We're stellar parents. 

Merry Christmas from Wisconsin!

I hope your Christmas was filled with peace, joy and a bit less excitement than ours. Our day started with a 5:30 alarm (because apparently AJ was afraid he wouldn't wake up Christmas morning). That woke him up, along with us because he was sleeping in our room due to his aunt, uncle and their  puppies in his room. We heard Teddy stirring, so we decided to bring him to our room for family snuggles until 6 a.m. when we'd go downstairs to check to see if Santa came. 

Teddy was so excited to come into our room so early that he somehow stepped in a basket (that isn't anywhere in the walking path) and cracked his chin on our dresser, knocking down several things with a clatter that accompanied his cries. We saw quickly that he was dripping blood, unfortunately from his chin. That's a tough area to get to stop bleeding, especially when he wouldn't let us apply pressure and barely would let us keep dabbing it after the first couple minutes. After just a few minutes he was done crying and wanted to bounce all around our sheets, rolling around with his face on the sheets. Let's just say we got to do a couple loads of blood-stained laundry. 

After a bit, it seemed to stop dripping blood, no thanks to liquid skin which only resulted in protests. A shower seemed to help stem the bleeding and at least get him clean. So we went downstairs to see what Santa brought while debating whether we needed to head to the hospital for stitches.

We had excited kids for opening presents but determined we really did need to take him in for medical treatment. Fortunately urgent care was open with a short wait posted online. (Urgent care is a much quicker process and typically way less traumatic for Teddy as he has really bad memories from the ER.) We had family at our house to hang out with AJ, so we took Teddy in for a Christmas visit to the hospital.

This was before the trauma of treatment started.

The doctor and nurse realized pretty quickly that it did indeed need stitches ... and that applying a bandage with numbing cream wasn't going to work. That sent Teddy into hysterics because he really does not like bandages on him, and I'm sure it felt funny to have it being numbed. So instead they rounded up probably all the doctors and nurses working at 7 a.m. Christmas morning to have a team of 4 people to assist. 

We did a blanket wrap, literally restraining his arms and legs with a blanket and then applying pressure. It took 5 of us holding him while the unlucky doctor put in 4 stitches into a hysterical Teddy. There are few things worse than having your child hysterical (or lifeless after seizures) and being unable to do anything to make it better. 

However, as soon as the stiches were done, Teddy bounced back quickly, smiling as we left the hospital and excited by the time we got home to ring the doorbell and see everyone inside. 

Once we got past that excitement, we had a splendid Christmas. The highlight was seeing my 99-year-old grandfather and making memories with him and the boys. The kids loved their presents, and we even managed a Christmas morning run for some of us. 

Unseasonably warm weather allowed Teddy to join us for our Christmas run. 

We're not too excited we get to start the New Year at urgent care because that's when Teddy's stitches need to come out, but that should be less traumatic for all of us.

Peter Pan Tried Flying

Ugh, this kid will be the death of me. Or the death of himself.

Apparently after being Peter Pan for Halloween, Teddy thought he should try flying in real life. He fell over the railing from the second floor or possibly the top of the stairs. He landed with a thud (that's obvious, right?), stunned for about 30 seconds and then started crying without moving. Talk about heart-stopping moments.

Yet within 5 minutes, he was done crying and moving apparently normally. That didn't change the fact that we determined it was best to take him in to get evaluated given his incredibly high pain tolerance and lack of communication. He was excited to go for a car ride with both mom and his babysitter in the middle of the day. He was still excited when we went into the hospital. 

I'll be honest I felt a bit ridiculous telling the receptionist that he fell over the railing for two reasons: the fact that he fell over a railing itself and the fact that he was giggling and appeared perfectly fine. 

(Sidenote: the ER won't tell you whether you should go to urgent care or be seen at the ER. However, urgent care will always take you down the secret passages to the ER when they determine you really needed ER services. When in doubt and not clearly a life-threatening situation, we should always try urgent care first. Of course, this was my third trip down that secret passage ...)

As soon as we went back into the ER, though, Teddy's demeanor changed. And the moment I tried to push his chair into the ER treatment room, he instantly began crying and actively resisting going into the room. We were quite the spectacle with a whole ER team ready to evaluate and treat Teddy, asking me what they can do to help. My response? "The only way he's going in that room is if we force him."

You see, that was the same room where he was intubated. Even though we thought he was out of it, he clearly has traumatic memories. I did manage to get his chair into the room and honestly don't remember whether I had to pull him from him chair or managed to get his chair into the room. (Let's just say we both have some traumatic memories from there.)

They quickly permitted me to have another caregiver present, so we got an extra set of helping hands. And we needed them and then some. I tell you, it was much easier to wrangle Teddy when he was smaller. I'm still larger than him, but he's on path to outgrow me much quicker than I can handle. I'm less concerned about him growing up than I am about not being able to restrain him for medical procedures and wrangle him as needed to get through days like this. 

They decided on a chest x-ray but needed no further tests thankfully. It was challenging enough to get that one done even though it takes about a minute and is completely painless. From the moment Teddy went into the treatment room, he was crying non-stop. At one point, I was concerned he was going to throw up because he was crying to hard ... which would have then indicated a possible concussion when in reality he just hated being there. 

Our nurse was able to get us to a private waiting room with a couple couches, chairs and kid table and chairs. It still took about 15 minutes, but he finally settled down and stopped crying. We rearranged all the furniture repeatedly, sat in everything, ate a snack and enjoyed apple juice. We waited there until they cleared Teddy to be released.

We took off his mask when he was alone in the room and crying ... poor kid.

Although Teddy was unfazed once we left, I know how challenging those visits are physically and emotionally on all of us. I wish that our childcare provider didn't have to endure the hour of crying and the feeling of helplessness when nothing calms Teddy. But I absolutely appreciated her help and calm demeanor as she bear hugged Teddy to get him out of his chair into my lap for the chest x-ray and helped redress him after he had an accident (while I was holding him, of course) and kept Dave updated. 

And in related news, we have renewed our efforts to safety plan the railing. Teddy clearly didn't learn any lessons as he was trying to climb the outside of the stairs the next day ...

Mayo Clinic of Genomics

Today was monumental for our family. We visited the Mayo Clinic of Genomics for the first time. We spent 2 hours with a team of 5 people who not only know what Congenital Disorders of Glycosylation (CDG) are but have invested their lives into supporting families and research and development of treatments to improve quality of life.

Two months ago we thought the only CDG clinic in the United States was at Children's Hospital of Philadelphia (CHOP). Given that Teddy is relatively healthy, a consultation and trip there didn't make sense for us. However, at the World CDG Conference, I heard Dr. Eva Morava present and reference Mayo Clinic's work with CDGs. Within a week, we were scheduled for a consultation and asked to join a natural histories research study. (Interestingly enough, last month I learned another PIGN family in Canada is attempting to remotely participate in the same study.)

Mayo Clinic, with a nice mask reflection to remind us that COVID is still a thing.

Although I was excited for today's visit, I was also leery of the first portion because it consisted of an EKG and labs. If you've never had an EKG, it's an entirely painless test that should take literally a minute or two, probably a total of 10 if you count hooking up the wires and the stickers. Let's just say our experience took approximately an hour and required an extra tech because we needed 3 of us restraining Teddy. The removal portion of the wires and stickers was really quick because of all the practice Teddy had ripping them off when we were trying to actually do the test ... by then, he was a pro and ripped off most of them himself (aside from the one sticker that we discovered when we changed him into pajamas tonight).

From there, we headed to labs. They needed probably 10 vials of blood or so, along with a urine sample. For Teddy, that means attaching a plastic bag to catch his urine. That experience wasn't pleasant for Teddy and again required an extra tech because 3 is better than 2 for restraints. My apologies to Teddy because I'm the one who removed his collection bag ... and it was sticky, but oddly he wasn't fazed by that.

Once we got through the torture sessions, we were able to finally eat some breakfast (because they were fasting labs) before we actually saw his team. His team consisted of the nurse, who was only there for vitals, and then the genetic counselor, lead researcher, a resident doing rotations in the clinic, a dietician and a world-renowned CDG expert Dr. Morava. We had to move to a different room to accommodate the entire group because we met with them collectively. That had several advantages in terms of shortening our overall visit time because they collaborated for what they needed and allowed them to multi-task on doing Teddy's evaluation while Dr. Morava talked with us. 

Our visit lasted approximately 2 hours and covered everything from a refresher on Teddy's diagnosis to what's intended with the research study to concrete answers to questions we had, all while examining Teddy. While some people might be overwhelmed by 5 medical professionals in a room, with their genuinely caring personalities (and the fact that they weren't doing any procedures), Teddy instantly became his happy self. He was thoroughly showing off for the team, not necessarily showing tremendous fine and gross motor skills, but did he ever show off his charm! He was giggles, smiles, shenanigans (apparently he wasn't supposed to talk on the phone?), persuasiveness (as he directed exactly what everyone should do and where they should sit) and joy. He was perfectly content with all the attention and particularly enjoyed the fact that none of the team cared when he discovered the sink in the room. I'm not exaggerating when I say he washed his hands for at least 15 minutes straight ... if not longer. And he totally dunked his head under the water, too, so his hair was soaking wet.  

We received a couple educational materials, which is pretty cool to get Caring for Your Child with CDG and A Message for Parents of Children with CDG. Although we haven't had a chance to read them yet, I'm eager to and look forward to the digital versions to share with our other PIGN families. Seriously, to see anything in print on CDG just doesn't happen, so it's a wonderful resource. 

Dr. Morava also walked us through a diagram they're piloting for educational materials. Without her explanations, it's probably Greek to you. With her explanation, it helps us understand better Teddy's specific type of CDG. The more common CDGs like PMM2 affect the sugar blocks at the start of the glycosylation process. GPI-anchor ones like PIGN affect later in the process and prevent the final sugar block from attaching (see the left side of the middle part of the diagram). Since GPI-anchor disorders impact later in the glycosylation process, it is harder and more complicated to develop treatments. 

This is glycosylation. Makes perfect sense, right?

The key things they are working on are a blood test to concretely diagnose GPI-anchor CDGs. Right now, the only way to get the diagnosis is through exome sequencing, which is extremely expensive, time consuming and only provides the "likely pathogenic" mutations. In other words, it's not a confirmed diagnosis with a concrete test. They're working on a simple blood test that would allow correct diagnosis sooner, cheaper and more effectively. Also, that blood test would confirm that the PIGN mutations are pathogenic, that there's a GPI-anchor disorder.

That confirmation will pave the way for gene therapy. Gene therapy treatment is not in the immediate future, although she predicts it will be approved in about 3 years. That approval is not necessarily for CDGs, but once gene therapy starts getting approval, it will be relatively simple (her words, not mine) to transfer that knowledge to other genes. I'm extremely curious on what potential gene therapy might have for older individuals, but I didn't ask the question because the treatment isn't even developed yet.

But the exciting thing about working with this team is that we'll learn all these things. We'll know when there's new developments, what's happening in research and be a part of that. They look to collaborate with parents to make sure the materials make sense and that the work aligns with the needs. In fact, she mentioned the possibility of getting someone to research why CDGs present so differently in different people, the wide range of impact and the differences even among family members. That would be fascinating.

One of the things we asked about was the COVID vaccine because we've heard different things on how COVID and the vaccine may impact people with CDGs. Dr. Morava shared that they have patients with CDG who have been vaccinated and then evaluated for the effectiveness. She said that because of how CDGs impact immune systems that the vaccine is less effective. However, she said that GPI-anchor disorders are less impacted than other CDGs in terms of the immune system, so the vaccine should be more effective for a PIGN person than a PMM2 person. She still recommended the vaccine as it provides some protection but cautioned that it won't provide the same effectiveness level as the general population. This was good for us to hear as it means we'll want to ensure Teddy gets the most effective vaccine available, knowing that he won't get full effectiveness from it. 

I know this is a lot of information, some far more technical than usual, but I want to share it for other CDG families as well as for our own future reference.

The team was absolutely phenomenal. They genuinely were excited to spend time with Teddy and were absolutely fantastic with him. My mind is boggled by the incredible intelligence of Dr. Morava, yet the humility and ability to connect with both us and Teddy. (Teddy generally disregards COVID precautions, so he was hugging her while chewing on his mask.) I'm even more amazed that Dr. Morava is Hungarian, spent time working in the Netherlands and then was recruited by Mayo. How you can pronounce all these technical terms in one language, much less at least 3, is beyond my comprehension. Heck, I was just impressed that I can count to 10 in German after nearly a year of Duolingo ...

Oh, fun fact, the researcher is actually from Germany! I'm pretty sure that of the 5 people on Teddy's team, at least 3 of them were born in other countries. I'm so excited to have such a great team for Teddy to partner with his neurologist. We'll be scheduled to go back in a year for the study and follow up, but we now have a terrific resource where we can reach out should we have any questions or concerns.

Now, I just need to remember to share with ya'll in another post the excitement Teddy had about our hotel stay leading up to his appointments. 

Memories

Today we got a glimpse inside Teddy's mind, into his memories. Or at least, without him being able to vocalize his memories, we have a really good idea even if we can't confirm it.

He was at the park today with his sitter, and he was super excited to see an ambulance there as the paramedics enjoyed their lunch break. His excitement was noticeable enough that they kindly offered to let Teddy take a look inside. I always love when people go out of their way to brighten other peoples' days, doing little things that make all the difference in the moment. 

Teddy was excited about the opportunity to hop inside ... until he looked around and freaked out. He began vocalizing, backed out immediately, hopped into his chair, buckled himself in and scooted away backward. 

Teddy's taken two ambulance rides in his life. He was sedated and intubated for the first in 2017, as it was a transport from Oshkosh to Milwaukee. The second was in 2019 from a Disney resort to downtown Orlando. He became alert during that ride, after his rescue medication kicked in, when he realized he didn't want to be there. Dave was in the back with him, helping restrain him with the paramedics and trying to calm him. Me, I was in the front seat, staring at a lot of traffic in downtown Orlando and listening to the driver agitated with others on the road who wouldn't give us the space we needed. In fact, we missed the hospital exist because some dimwit wouldn't move over for us, so we couldn't get into the lane to exit. 

Needless to say it was traumatic for all of us. I've had moments that dragged me back to the past, like my first time in the ER with Teddy after that trip. But for the most part I'm able to leave the past in the past. Apparently, though, Teddy still has those memories in his little mind. What was supposed to be a fun little adventure to check out an ambulance instead was a trip down memory lane to a time that traumatized him as well. 

It made me want to hug him extra tight and whisk those memories away. However, since Teddy lives only in the moment, he was already well past that. I snuggled him anyways and chalked it up as a little insight into his mystery of a mind.

Life with Teddy is Scary

Remember when I said I'd take puke over fevers any day? I didn't need to test that theory again so soon.

Last night was a normal night, although Teddy didn't settle down to sleep on his own. That's not uncommon, so Dave went to snuggle by him. When he came down, he informed me that he changed a really liquid diaper (hence blankets and a giant stuffed elephant going in the laundry). Teddy was asleep, though, so we figured it was a one-time thing ... until 2 hours later when Teddy was crying. I had already been asleep for a about 20 minutes (something about getting up at 4:10 a.m. to go running), but I crawled out of bed to assist Dave with another liquid poop diaper.

We ended up with poop down Teddy's legs from pulling down his pants, so we decided a shower was needed. I was concerned that would wake him up and make it hard for him to settle back down. How right I was for the wrong reasons. As Dave showered Teddy and I cleaned his room, Teddy started scratching his neck. By the time he came out of the shower, his arms were bright red, and he was developing hives.

This is the aftermath of the hives on his neck, all the scratches.

That was enough for us to determine the ER was where Teddy needed to be, so Dave got him dressed while I threw things in a diaper bag. They were on their way, and I pretended to try to sleep. In reality, I was texting Dave for updates and worrying. Teddy had more diarrhea, hives head to toe and lips swelling, so we were glad we took him to the ER when we did. When Teddy puked, Dave pulled the trigger to call his parents at 11 p.m. when they were sound asleep to get someone down to our house, so I could head to the hospital as well.

The last time Dave and I were both at the Oshkosh ER with Teddy, we ended up inpatient at the ICU in Milwaukee. So, just to be safe, I threw together several changes of clothes, deodorant and toothbrushes. As I did that, I realized this is the difference between our lives and parents of typical children. If it were AJ instead of Teddy, we'd have given him Benadryl and monitored him at home. Because it was Teddy, we went to the ER, both of us terrified of seizures and the endless string of what if questions.

This photo captures how wonderful Dave is as a parent.

When Dave's dad came down, I headed to the ER shortly before midnight. I made it there for the PA's report where we determined that Benadryl would be sufficient rather than adding steroids. The best guess was a stomach virus, complete with viral hives. (We never had experienced those, so they were rather scary with how quickly they developed and overtook his body.) We headed home, where Dave probably didn't sleep all night as he laid awake worrying about Teddy.

Me, I knew I was the one staying home with Teddy all day, so I got the 5 hours of sleep I could. Teddy had a few more diarrhea diapers this morning, but by 8 a.m. he was pretty much his usual self. As I told both my parents and my in-laws, it looked like a tornado went through our house ... a few times. That's a good sign because that means Teddy is feeling better.

Fingers crossed that we all get a lot more sleep tonight. Even when Teddy's up half the night sick, he still doesn't believe in the restorative power of naps as you can see below.

Disney ... Where Nightmares Happen

I referenced in my past two posts that Teddy got sick while at Disney. After a fun-filled day at Animal Kingdom, I had already fallen asleep when Dave woke me up by whisper calling my name, followed by the dreaded phrase, "There's something wrong with Teddy." Talk about going from a sound sleep to standing in the bathroom flipping on a blinding light in an instant. As soon as I turned on the light, we knew Teddy was having a seizure, and our nightmare was just starting.

There's some things I'm incredibly grateful for looking back on the experience:

1. My mental script of what to do when Teddy had a seizure worked perfectly from the rescue medication standpoint. He's never needed it before, but I'd mentally walked through using my Garmin watch to start a run to time a seizure to know when to administer rescue medication. 
2. Dave's parents were literally two doors down, so they were in our room within two minutes of me waking up, thanking to me pounding on their door waking them from a sound sleep. I couldn't be more grateful for all they did that night and the next day, as well as Dave's brother and his family ensuring AJ enjoyed his day.
3. Disney was incredibly responsive, having multiple people on site within 5 minutes of being called, all doing their best to help. They were also great after the fact, helping out with our journey back to the resort and calling the next few days to check on Teddy.
4. The EMTs were literally right down the road and were there within probably 10 minutes of the the moment when Dave woke me up. They were also great at their jobs and even offered for us to visit the station later in the week, although we didn't make it there.

This was the first time we've had to use Teddy's rescue medication since he got prescribed it in December 2017. All my fears of using it were completely overruled by the fact that he needed it, so again, that mental script worked perfectly.

This was also the first time Teddy's ridden in the ambulance with lights, sirens and the whole 9 yards. We called EMTs for the very first seizure he had but never since until now. He rode in an ambulance for transport back in December 2017, but that was once he was stabilized. This was a 30-minute ride with lights, sirens and even honking horns to try to get into the right lanes around drivers who didn't care about the ambulance. The sound the siren makes when it echos in the overpasses still sends shudders through me since I heard it so many times on that ride.

We spent the night at the Children's Hospital ER. The staff were fine, but it was such a different experience than when we've visited our local ER. There's something to be said for smaller towns where there's not so many patients. We got quite the response when Dave pushed the call button, though, when Teddy vomited all over himself and me because they thought he was having another seizure. We got released around 4 a.m. and had nearly an hour-long taxi ride back to the resort due to the taxi driver getting lost repeatedly. Let's just say we went to Hollywood Studios twice before 5:30 a.m. Oh, and the kind taxi driver gave us a tour of Orlando on the way, pointing out the nightclub shooting scene and letting us know when we were driving through the worst part of Orlando. Trust me, I didn't need that information at 4:30 a.m. when I was operating on less than an hour of sleep and a whole lot of stress.

Seizures suck.

We got back to the resort at 5:30 a.m. and sent grandma back to her room to rest (not that she got any rest) because she had stayed with AJ the entire night. AJ managed to sleep through us, Dave's folks and several Disney staff in our room with all the lights on and all the commotion. Guess we wore him out. AJ woke up at 6:30, after I had napped for an hour, so I took him to his grandparents' room and then attempted to fall back asleep. I woke up again at 9, took a quick shower and headed out for my first-ever (and second and third) Uber ride to get Teddy's rescue medication filled.

Tuesday was one of the worst days of my life. I was that person who spent the entire second Uber ride silently crying in the backseat because I couldn't handle being told that the first pharmacy didn't have the medicine in stock. Then, I lost it at the second Walgreens and had a complete meltdown in the bathroom. Then, to add insult to injury, the third Uber ride back to the resort got just as lost as the taxi driver and took me to Hollywood Studios a third time. (And, let's just say, they're not so keen on you driving through the parking lot without stopping when the park is actually open.)

Dave headed to meet AJ for his Jedi training-at my insistence-while I stayed with Teddy. I got puked on 3 more times and was convinced we needed to go back to the hospital because Teddy couldn't keep even the medicine down and was still burning up with a fever. I was terrified he'd have another seizure, so I was just waiting for Dave to get back to head to the hospital. Then Dave's mom showed up, and all of the sudden Teddy could move from his deathbed.

At the insistence that I needed to eat something, I went to the snack shop and proceeded to have another meltdown when the lady asked me how my day was. I don't think she was expecting me to burst into tears, so I made my way to the bathroom for my second bout of sobbing. And then when I got to the room again, I went to our bathroom to sob one more time before determining I needed to run.

You see, it's hard to run and sob at the same time. Running forces you to regulate your breathing and calm down. For the first time all day, I genuinely smiled and felt the tide turn in the right direction. We monitored Teddy closely and drugged the snot out of him with Tylenol and Ibuprofin, along with his increased dose of his anti-seizure medicine.

The next couple days were sketchy, monitoring him closely, keeping him well medicated and worrying. Turns out, as we discovered when we took AJ to our walk-in clinic Sunday, Teddy had strep throat. We had no clue until his seizure, and the only warning sign in hindsight was shivering before bed. We had attributed that to being chilly from a water ride and going onto an air conditioned bus. Even through the illness, there was no sign of sore throat that we could tell. We had fever and vomiting as his symptoms. He's a tough kid to diagnose with his lack of verbal communication and high tolerance of pain.

The saying ignorance is bliss is true. This event ripped away some of that ignorance, that ability to pretend it won't happen to us. Those kids who need ambulance rides for their seizures or who actually need rescue medications? That won't happen to us, even though Teddy has a rescue medicine prescribed. Yeah, right.

Then I think about all the what ifs, which is such a slippery slope. What if this happened on the airplane? Teddy could be the reason a flight is diverted for an emergency landing. What if this happened when we've been in some of our most remote national parks, literally 3 hours from medical services? I don't know. What if a seizure like this happens when Dave isn't right next to Teddy to notice that his breathing changed and something is wrong? I don't know.

The what if questions could go on and on, but that's not a productive line of thinking. The best we can do is work to be prepared in the event that we have a situation arise in the future, work on our mental scripts and continue to trust in God to help us along the way.

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. 

Adenoids - Who Needs Them Anyways?

Teddy continued to have several ear infections throughout the past years, including one this winter where the pediatrician asked if an ENT ever evaluated his adenoids. The pediatrician said that adenoids could contribute to ear infections, constant runny nose and slight snoring ... all of which Teddy has. As soon as he said it, I vaguely remembered way back to when Teddy had the dermoid cyst removed from his nose that his ENT said something about his adenoids. I ignored it at the time since it wasn't the priority when he had a cyst that went from the tip of his nose to the lining of his brain.

But, now that those dermoid cyst surgeries were way behind us, it seemed worthwhile to explore removing his adenoids. Our logic is that whatever isn't necessary to Teddy that could contribute to illness in him should be removed. Given his high pain threshold and lack of communication skills, it's often challenging at best (impossible at worst) to know what, if anything, is medically wrong with him. 

His ENT wanted to try a long course of antibiotics first, to see if that resolved things, before considering surgery. Six weeks later, we were back again, still with a runny nose. So, she scheduled us for surgery. She would only take his adenoids. She didn't want to remove his tonsils because they weren't enlarged at all. Since she wouldn't even take his tonsils, we didn't ask her about his appendix or gall bladder. (Hey, we're serious about removing those non-essential, potentially troublesome, extra body parts.)

Surgery was April 17 at 2:30 p.m. Yep, that meant no solid food all day. That part actually went much better than we expected. We went sledding, did haircuts and showers and then headed to Milwaukee. We arrived with enough time to hang out at the mall for a bit riding escalators, which are the coolest thing ever, in Teddy's mind.

Post-op misery, but at least he got a blue gown this time.

Doctors and medical procedures are the worst things ever, in Teddy's mind, at least since his NIH visit. That meant lots of tears, screaming and escape attempts during the pre-op until the sedative finally kicked in. The surgery went perfectly fine, easy and quick. Post-op was tough, as to be expected with the anesthesia, pain and fear of medical places. We managed a few smiles before we were discharged, along with 4 popsicles. Most of those smiles were directed at my aunt, who is absolutely fantastic with Teddy and an incredible resource to our family as she lives in Milwaukee.

He laced that shoe all by himself on the drive home ... knots and all.

The drive home was better than expected with Teddy devouring food and a milkshake by the time we got to Fond du Lac. We picked up AJ from our friend's house, grateful for all the support to make life happen for our family.

It does indeed take a village, and we have an awesome village!

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?

Beyond Blessed and Grateful

As promised in my previous post about Teddy's incredibly scary seizure episode, this post is about gratitude. Although I hope that each of you reading this never endures anything of a similar scope, I am incredibly grateful for the tremendous outpouring of love, prayers and support we received. Experiencing that much goodness allowed me to fall asleep the first night home by counting my blessings instead of my fears.

First, I have no doubt that God watched over Teddy throughout this entire experience. Due to Dave being ill, he was home from work and able to attend the Christmas program, which wasn't originally the plan. My mom was over visiting to help the next few days, so she was instantly there to help keep AJ's life normal while we were gone. The huge snowstorm that was supposed to hit never materialized (although that could just be a result of me not working in Green Bay because I was in the ICU ... it always snows when I drive to Green Bay this winter).  We had the most incredible nurses, doctors and medical staff working on Teddy both in Oshkosh and Milwaukee.

God certainly heard the prayers of all our family, friends and their family and friends who were praying for our family, even before the prayers were sent His way. At the ER, I posted to our PIGN group, where each family has a child or children with Teddy's diagnosis. Unfortunately, they relate all too well to how quickly a seizure or illness can change everything. That meant that within minutes we had prayers from across the country and literally around the world. We had an offer that Chicago wasn't that far from Milwaukee if we needed anything. We had people in New York and Florida offering to order food for us or whatever we needed. Had we asked or given them the information to do so, it would have been there without a doubt.

We had offers from at least 5 different people to take AJ while we were in Milwaukee, some expected from dear friends, others from co-workers and one quite surprising yet sincere offer from one of Teddy's therapists (who had met AJ one time). Thankfully my mom had that under control, but it was reassuring to know that we had so many people willing to include AJ into their families.

Both Dave and I are blessed to work for employers, and bosses, who are extremely understanding. It's so nice to be able to focus on what matters most instead of worrying about missing work. Both our bosses offered to assist however they could, even bringing things down to Milwaukee if we needed. 

Dozens of people sent their well wishes via texts and Facebook, along with prayers and positive thoughts. Many offered to help (multiple times) with anything we needed. We had folks we hadn't seen in years who live in the Milwaukee area offer their assistance.

The one thing I discovered, though, in the process is that it's really hard to ask for help even when you want it. The only person we asked, aside from my mom caring for AJ, was for my aunt who lives in Milwaukee to pick up some necessities we had forgotten. (Necessities at that point included Tylenol and leggings for me, pacifiers for Teddy and decent coffee for Dave's folks. Standard necessities for nursing the stomach bug and a sleepless night in the hospital.) Not only did my aunt oblige our requests, but she also brought donuts and other snacks for us, along with a singing Christmas toy to entertain Teddy. (Teddy was so miserable the toy did nothing for him until we got home, but he does indeed like it now that he feels like himself.) She also came back for a second visit later in the day, bringing Dave's favorite sandwich for dinner.

I had someone offer to bring us a pan of lasagna the Saturday we got home. I almost said yes because lasagna sounded really good to me but said no because we really didn't need it. It seemed selfish to have that person make lasagna, especially heading into a holiday weekend. However, when Teddy's teacher asked to stop by after school on Friday with his artwork and Christmas present for us, she surprised us with a card from his team that included a generous gift card to a local restaurant. She explained that they wanted to do something and figured we didn't need to worry about cooking a meal after the events of the past few days. I greatly appreciate the gesture and the lesson that I need to take away to simply do rather than ask or say to let me know how I can help. It's incredibly hard to ask for help and much easier to accept it when it's simply given to you.

The boys love that the card sings. I love the thoughtfulness.

A few acts of kindness surprised us in the mail. The boys both received cards and pictures from their cousins—a sweet gesture to let them know they were in their thoughts. Teddy also received a card that was quite unexpected from one of his bus drivers. I'm assuming his teacher told the bus drivers why Teddy wasn't on the bus, and she mailed a card to him letting him know she's praying for him.

This was completely unexpected kindness.

When we went to Dave's family Christmas gathering the weekend we returned home from the hospital, we had several people comment that all they needed for Christmas was to see Teddy smiling and being his usual self. If there was ever a doubt of how many family members were praying for Teddy—not that there was—it would have been removed by hearing from Dave's family. (His mom is one of 13 children, so there's a whole lot of people at that party checking on Teddy.)

It's a combination of expected support from dear friends and family, who've been with us through the initial seizures, to the prayers and love from our PIGN group to the overwhelming support from co-workers, our employers and everyone who knows Teddy.

To everyone who supported us, thank you. What you may have viewed as simple posts on Facebook, texts you sent without worrying what you were typing or another ordinary prayer made us feel so loved and supported through those trying days. I couldn't have imagined the outpouring of support we received, but I am oh so grateful for it.

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.