(Note: the title has now become a family inside joke, a hospital stay...but not Riley's)
Staring at this blank page not knowing where to start is usually how I begin one of these, today isn’t any different. Good and bad things have happened since I expressed myself a few weeks ago. Most days have been the usual routine, and towards the end of the month we started to get ready for our much needed vacation. Right before we left, Riley had his neurology appointment at Seattle Children’s, with Dr. Saneto, to see if he had any additional ideas to throw into the mix since we’re coming down a dead end road. The appointment went fairly well, he was really easy to talk to and does think that Riley’s underlying diagnosis is either mitochondrial or genetic. There is a bigger chance of mitochondrial because there are more options there than genetic. So that’s what we are starting with. Right now we are waiting to find out if they still have enough tissue from his March muscle biopsy to run the tests. If so, we’ll have results in 6-8 weeks. If not, he’ll need to have another biopsy, hopefully sooner rather than later. We should know if he’ll need surgery again or not within 2 weeks of our appointment, which is this Friday….which means I’ll probably be calling to bug in the next few days.
Riley also has a pediatric geneticist appointment at Children’s in mid April, so between now and then we’ll be working on either eliminating or finding possible mitochondrial answers. We feel good that we’re at least back to the process of moving forward again, after months of looking for answers stalled with complications and hospital visits. With that news, we headed cross country the next morning for Raleigh. Besides the very unfortunate ending of the Superbowl, we had a great time being able to visit with family for the weekend, before heading to Savannah Monday morning. Riley was such the little travel trouper. He did awesome on his first plane rides, car trips, and being walked all over historic towns. Mom and Dad got to walk around Savannah with drinks in hand, bring Riley to his first Catholic church, go on a haunted ghost tour, go to an old plantation, eat yummy southern food, & shop. We then drove up to Charleston on Wednesday and spent time seeing the fort where the Civil War started (and the Atlantic ocean!), shopping, eating, touring museums & an old dungeon, and more.
An unfortunate complication to our trip though. We had arrived back in Raleigh after two nights in Savannah, and the next two in Charleston, Friday evening. Right after having his evening meds, and in the matter of seconds of being moved in my arms from the couch to his chair in the dining room to have a family dinner, Riley had stopped breathing. I went to set him down in his chair, and it was very noticeable that he was grey in the face and not breathing. I rushed him back to the family room, Chris right on my heels. Next thing I knew I was screaming for my aunt to call 911, my cousin started CPR, and I ran as fast as I could upstairs to grab his emergency antiseizure medicine. I don’t know how I managed to not trip going up or down the stairs moving that fast. I’m sure the whole thing lasted no longer than a few minutes, but seeing your child not breathing for that amount of time (especially not already in the hospital where you have oxygen right there and tons of professionals), I was terrified of losing him right there. Right after I gave him his antiseizure med, he slowly started to gain color back and take short shallow breaths. Within the next minute or two, I swear the whole Raleigh fire department and EMTs where in my aunt and uncle’s house. We got him stable and he experienced his second ambulance ride off to the ER.
I thank god that this didn’t happen while on an airplane. While visiting a southern town by ourselves without my family. While driving to or from our vacation stops. So many different ways this could have been much worse. Riley was checked out at the local ER, blood ran and determined that he wasn’t coming down with a bug, all his basic lab work looked fine, and he wasn’t dehydrated. Since he was deprived oxygen for a good chunk of time, it was safest to have him transferred to the Children’s hospital to try and determine why this happened and gets him stable further. By 3am, we were finally there and getting settled. At 5:45am, his alarms where going off, and I got up to check on him, and sure enough he was grey in the face again. I yanked the call button out of the wall (so it would continue to alarm at the nurses’ desk), and threw open the door and got everyone running. This time it seemed more apparent that it might have been a seizure. Friday evening it wasn’t obvious because the big symptom was that he just was not breathing. He wasn’t doing any obvious seizure movements like we’ve seen in the past, but his jaw had been clenched (I couldn’t get into his mouth well to clear out secretions to eliminate that as a problem for not breathing). The episode early the next morning while in the hospital, his eyes were rolled up and back, like we’ve seen in the past. He would not focus on me while calling his name, like we’ve seen in the past. In addition he wasn’t breathing for a short time, but came around on his own within a minute without any assistance. After that minute he was there and aware, until he decided that just tuckered him out and went back to sleep.
Needless to say, now that it was Saturday morning, and our flight home was Sunday morning, we did not expect to be coming home yesterday. We expected to probably still be in the hospital as of today, if not further into the week. Thankfully, doctors had their butts in gear, especially for a weekend. He was checked out and they contacted Vlcek to determine the best course of action, and if Riley was going to be safe enough to fly home. After collaboration and consensus, with Riley seeming like he was back to his normal base line that morning, he was given a bolus (extra dose) of one of his antiseizure meds early Saturday afternoon to try and help put his body back on track, and raised that dosage of his same med, at its usual times. Even though we don’t know with 100% certainty that these two episodes were seizures, the likelihood is very high. All docs agreed that even though he’s not sick, his body has just gotten worn out from all the traveling, different schedule, less sleep, etc. So like when sick, his seizure threshold goes down, and is more likely to have one. Same goes in this case, and that’s probably how we got to this point. He came back around real fast to a normal base line, and it was decided that he was no less safe to fly home than he was to fly out to begin with, and he was discharged Saturday afternoon.
We were both pretty nervous flying with him so soon after this, but were happy that he was able to relax and rest for a day and night in Raleigh before doing so. We also let our flight attendants know what he had just gone through, so they would be prepared if all the sudden we were jumping up for help on the flight. But he did great, even better than flying out a week earlier. Slept 75% of the time, and has been a sleepyhead today as well. He was pretty darn happy to be home last night. Tons of smiles and giggles, helps he slept most of the day too. Going to be taking things easy in the coming days and weeks, let his body rest and recharge. He’ll be seeing Vlcek by the end of the month, and may or may not be having another biopsy surgery in that time frame as well.
We will not let another bump in Riley’s road take away from the fact that we had and enjoyed most of our much needed vacation. Yes, his ordeal was very scary and not the best ending, but we can’t all live cooped up never doing anything because something MIGHT happen. You never know if something bad will happen, or not. Especially with not having his diagnosis, things are just unknown. He could present some other random symptom next week that we could never even think of. Until we know exactly what’s going on under the surface, we will all live our lives with a positive outlook, and enjoy our time together, and the memories we make. And we certainly came home with many of those from our vacation.
