Pneumonia

After receiving Bryce’s diagnosis, we learned of other challenges he would likely experience at some point in his life. Since then, these things have entered our minds periodically and we have done what we could to prepare for their occurrence. Let’s be honest, when you have never experienced something and only have an inkling of what it’s like, you can’t REALLY prepare yourself for them. But you do the best you can and hope and pray it’s enough to get you through the trial. Thankfully it usually is.  This past month we experienced a few of these challenges and it was definitely a reminder of how quickly and unexpectedly things can go downhill for our sweet boy.

One night Bryce started having a new type of seizure. I’m no expert on seizures, but in our journey I have learned that sometimes they’re very subtle and hard to recognize. At first I had no idea Bryce was seizing. His breathing had changed, but it sounded the same as when he is trying to burp. So I patted his back and helped him get the air bubbles out, no big deal. As the evening went on, Bryce needed to be burped more frequently and I remember thinking “this is a bit weird”.

Hanging out in the ER

Shortly after his seizures became a little more obvious, but still very subtle. When he was breathing like he needed to burp he also began holding one leg out, one bent up, and his arms in. Again, I wasn’t worried because this is a normal position for him, especially when tired. What made me finally think he was seizing was that after breathing like he needed to burp for 30 seconds his whole body would visibly relax, he would look around and make a sad noise. I started keeping a very close eye on him after this. They were clustering every few minutes. I should have been more concerned than I was, but Bryce has A LOT of seizures. More often than not they tend to cluster like they were at bed time. So while I was watching him, I was also thinking “I’m sure they’ll stop soon and he’ll crash, like normal”.

But then they didn’t. In fact, they got worse. They got to the point where he was only getting a couple seconds break between the seizures. At that point I knew he was in Status Epilepticus (one of the challenges we knew Bryce would likely experience) and we got in the car and went to the ER.

From the time I got Bryce out of the car to the time I laid him on the bed, I didn’t stop my fast-paced walk. As soon as we walked through the doors I said “He’s in Status”. The nurses quickly jumped up, realized I was telling the truth, and led us back to a room. By the time we got there (which was like 10 seconds tops), there were at least 10 other people in the room ready to take care of my son. As soon as I laid him on the bed, someone was cutting off his shirt, another was putting oxygen on, a few were placing the IV, and another was administering the first dose of rescue medication. It didn’t really help so another dose was given. Thankfully this time it helped. Looking back, from the time I thought he just needed to burp until the time the rescue med finally kicked in, Bryce had been in Status for about four hours.

Waiting for our room in the hospital.

During all this I was keeping Jus updated because he was at work. He only had about an hour of his shift left, so he decided to stick it out. However, he didn’t want me to be alone. So he contacted our Bishop (our local religious leader), and he came and sat with us until Jus was able to be there. Before Bishop left, he and Jus were able to give Bryce a blessing. I am so grateful for a worthy husband who is able to administer priesthood blessings whenever we may need them.

While in the ER, it was decided that it would be best if Bryce was transferred to a room in the pediatric unit of the hospital so he could be monitored. So we spent a few more hours just hanging out in the ER until a room was ready for him. When it was, we got on an ambulance and they drove us to the old hospital, where the pediatric unit is located.

Ambulance ride to the old hospital.

Bryce ended up staying in the hospital for eight days. Even while they were happening, those days are blurred together. I don’t remember what happened on this day or that day, but I do remember the order of the events that took place. So, instead of finishing our story by the days, I’ll finish by sharing the events that happened.

Once we were admitted to the hospital, we had a very difficult time keeping Bryce’s seizures under control. They’d get to the point where he’d have one every two minutes, and another dose of rescue medication was given. It seemed like this cycle repeated every four hours. He also had a good number of tests done, trying to figure out what might be causing his seizures to be so out of control.

Turns out he had aspiration pneumonia (the other challenge we tried to prepare ourselves for) and one of his lungs was slightly collapsed. We started him on an antibiotic to fight the pneumonia, and put him on high flow oxygen so he didn’t have to work as hard as he was to breathe. Our hopes were that with these two things we’d be able to keep his seizures down.

High Flow Oxygen.

It almost worked, but then his seizures got bad again. After two doses of a rescue med it was apparent his seizures had no intention of letting up. So we tried a dose of a new rescue med. Still no improvement. Next we tried a loading dose of a fourth seizure med (on top of the three seizure meds he takes regularly). After 30 minutes and still no improvement, it was decided that an Electroencephalogram (EEG) was needed to help determine if he really was in Status again.

Of course, by the time the technician arrived the medication finally kicked in and Bryce completely stopped having seizures. All the electrodes were placed on his head and his brain waves were monitored for an hour. The results came back abnormal (which means that he is prone to having seizure) but no seizures were detected. We couldn’t complain though, at least his seizures were finally under control . . . or so we thought.

Getting the electrodes placed.

Between being very sick with pneumonia (easily the most sick he has ever been), and being drugged up on a lot of rescue medication, Bryce was not doing well. At this point he began having apnea spells (he stopped breathing for a few seconds while sleeping). When they first started they weren’t too concerning, we just kept him on oxygen to make sure his sats didn’t drop. But of course they got a lot worse.

At the time, it seemed like he’d stop breathing every minute. We had to stimulate him somehow (move his arm, rub his chest or face, etc.) in order for him to take a breath. He would hold his breath long enough that his sats were dropping down to the 40’s before we could get him to breathe again. Then he completely stopped breathing.

To us it felt like an eternity before he was able to breathe on his own, and it took a lot of help to get there. When he didn’t breathe after a bit of stimulation, our nurse immediately started bagging him and called the Rapid Response Team. Within seconds, a team of I-have-no-idea-how-many people flooded into our room with the Crash Cart. Unneeded furniture was pushed into the hall, and Jus and I were stuck at the foot of Bryce’s bed with no room to move. No words can describe how heart-wrenching it is to watch your child not able to breathe and know there is nothing you can do but hope and pray the medical professionals trying to help him are successful. A million thoughts raced through my mind, the loudest being “I’m not ready to say goodbye”.

Snuggling with Daddy.

Thankfully Bryce finally took a breath! Relief flooded over us and we knew he was staying with us. The team stayed in the room for a while longer to keep an eye on him. During all this we had a doctor talk with us, trying to help us figure out what our Do Not Resuscitate wishes are for our sweet boy. I’m not going to lie, it sucks that we have to have these discussions when our son is still a toddler.

During all this I learned something important. Despite how incredibly difficult this situation was, because of the love we have for our son and our desire to give him the best life we can, we were able to be strong for him when he needed us most. Once Bryce was stable again and we were alone, we both let our emotions take over and had a much needed cry.

After this event, it was decided that Bryce would greatly benefit by a transfer up to Primary Children’s. So, at noon Jus hit the road, making the 5 hour drive on his own while Bryce and I rode in the ambulance to the airport. We were going to Primary’s by plane (definitely not what I had in mind for his first plane ride).

My view of Bryce on the plane.

It was tiny and really loud, but Bryce was able to sleep for half the ride. I couldn’t see his face but I could tell when he woke up because his fingers started wiggling. I reached out and ran my fingers through his hair, hoping he would know I was there with him so he wouldn’t be scared. I don’t think I had to worry though. Based on the reaction of the flight nurses, I’m pretty sure he LOVED the plane ride and was giving them some of his biggest smiles.

Getting off the plane.

We spent three days at Primary’s. While there we gave him a loading dose of Phenobarbital and increased it as much as we could. We also increased his Topiramate and maxed it out as well. His amount of seizures had decreased a little each day we were there.  Our second night we did an overnight EEG. Once again, a billion electrodes were placed on his head and his brain waves were monitored. We didn’t get the final report from the EEG until after we were discharged, but when we did we weren’t surprised. It showed that despite being maxed out on his three regular seizure medications, plus a high dosage of a fourth temporary medication, Bryce is still having hundreds of seizures a day. They are most frequent during sleep and cluster multiple times an hour, but they don’t often present themselves physically so we’ll never really be able to tell when he is having them. Though we still see many seizures, we will never see most of them. Finally, it stated that his findings are “consistent with  severe epileptic encephalopathy”. Like I said, this wasn’t surprising to us but it still is a bit depressing to hear.

Reading Farmer Boy during the EEG

The day after his overnight EEG we were able to be discharged! The increase in his regular meds, plus the addition of a temporary one was enough to get his seizures controlled and not need a rescue med every four hours. The antibiotic that was helping with his pneumonia was also doing its job and he was slowly getting better, which also helped improve his seizures. We were even able to take him home without oxygen!

In the month that we have been home, Bryce has been doing amazing! We are seeing very few seizures, and he has even purposefully LAUGHED for us a good number of times! Hearing his beautiful laugh absolutely melts my heart! It is one sound I will always cherish.

I love his big cheesy grin!