Harrowing: adjective. extremely disturbing or distressing; grievous: a harrowing experience.
Precisely.
Let me start out by saying that I took Ryan to the pediatrician on Tuesday, Dec. 22nd, just to get him checked out. He was coughing a little and I wanted to make sure he was OK before the holidays hit and we were on the road and around cousins and such. The ped checked him out, said he had a virus so no meds were prescribed and said that we were OK to travel and be around other kids, since they are probably exposed to it (and other viruses) anyway. It did not seem like a big deal to me at all. Ryan seemed to feel fine and was not running a fever, but I tend to take extra precautions with him as I've been told that special needs kids can get sicker faster and longer and it can take a larger toll than it would in a regular kid. He was having fun at his appointment and loved to look in the mirror and crawl around on the table. He definitely did not seem sick or like he didn't feel well. Pictures of him at the pediatrician:
Just keep that in mind as I dive into this story.
We had a fabulous Christmas weekend with family and everything was great. We came back from Virginia, where we spent Christmas weekend, late on Sunday afternoon and just kind of took it easy. We unpacked, watched tv, had dinner; nothing out of the ordinary. Ryan snoozed a little around 5, which is not a typical naptime, but we thought it was because he didn't get a good nap in the car on the way home. We got the boys down to bed around 8 PM and Thomas and I came downstairs to watch Love Actually. We have a little tradition of watching it Christmas season - it's one of our faves - but hadn't watched it yet this season. We were enjoying the movie (re: falling asleep on the couch and catching bits and pieces of the movie) when we heard Stokes crying on the monitor. I will sometimes let him cry for a few minutes before going in there, and sometimes he'll put himself back to sleep, but for whatever reason this time, I hopped right up and wanted to go hold him. It was about 10 PM.
As soon as I walked in the room, I smelled vomit, which I assumed was from Stokes and the reason he was crying. I did not turn on the light, but went straight over to his bed and picked him up. As soon as I pick him up, he always stops crying and just wants to be held. It was dark in the room and I only had the hall light that was streaming through the doorway to see, but was looking at his crib to locate the vomit. I couldn't see it anywhere, but I could still smell it. So while I was holding Stokes I walked over to Ryan's crib to see if one of others had thrown up. As soon as I went to Ryan's crib, I could see it. It was on his pjs, in his hair, on his chin and cheeks and on his bed. His eyes were open but he wasn't crying or anything. It's not unusual for him to wake up and have his eyes open and not make any noise. I remember I was thinking, "gosh, I hope he doesn't have the stomach bug" and called Thomas upstairs. I needed Thomas to hold Stokes (I knew if I put him back in his bed, he would start crying again), so that I could clean up Ryan and his bed. As soon as I picked Ryan up to get him cleaned up, I could tell something was wrong.
He was limp. Usually he will help me a little when I'm picking him up. When I brought him out into the hallway and into the light, I could see that he wasn't looking at me or making any eye contact. I knew it must be some sort of seizure activity. It was not too different from the seizure he had about a month and half ago. I immediately took him to the bath to get him cleaned up and was hoping that the seizure would resolve relatively quickly. He wasn't really able to sit up in the bath, so I had to lay him down and he still wasn't making any eye contact. His hand or arm was shaking just a little. After his bath, we took a video so that we could capture what was going on to be able to show the neurologist later on. Here's the video. Warning - it's disturbing, at least to me it is.
Thomas and I were discussing whether we should take him to the ER. I don't know exactly when the seizure started since he was in his bed when it apparently began and he hadn't "come to" during the bath or right afterwards. Why in the world was there even a question of whether we should take him?!?!?!?!?! I was trying to think (or hoping) that this wouldn't be a big deal, but after a second of thinking about it, I realized that, THIS SEIZURE IS LASTING WAY TOO LONG AND WHY AM I NOT ALREADY ON MY WAY!!!! This still makes me mad that I was even questioning whether to go to the ER. It's a rule that if a seizure lasts more than 5 minutes, it's ER time. We threw on some pjs for Ryan and I put him in my car and took off to the closest ER. I told Thomas that I didn't want Ryan to sleep in the nursery this night and asked him to set up the pack n play in our room while we were gone. I was crying and worried the whole ride to the ER. I was imagining how the visit would go. I (naively) thought they would give Ryan some meds to stop the seizure, keep him there for an hour or so for observation and then we'd be back home. I was praying that his seizure would stop before we even got to the ER and they would really just have to check him out and let us go. Luckily since it was probably around 10:30 at night on a Sunday, the roads were clear and it didn't take long to get there. I signed us in and when the nurse called us up after a minute for triage and realized that he was still seizing, we were seen immediately.
The medical team at this ER started blood draws, IVs and asking me about his health history and the background of what was going on. They quickly gave him a dose of Ativan to stop the seizure. It didn't work and they had to give him another dose. They also started giving him Propofol to sedate him. He was moving around some and it was hard to tell if he was seizing or just getting upset about being poked and prodded. Due to the sedative and the Ativan, which slows down your whole body, the team felt like his oxygen saturation level was low and decided they bag him. This means that they put a masks on his nose and mouth while holding and manually squeezing a balloon type of product to force air in and out of his lungs. Let me tell you - this is scary. I think I was in shock at this point. My mind was almost numb, except for extreme worry and fear. I am probably getting some of my details about this part wrong because I was in shock. I don't totally remember all that was going on.
At some point they also had to intubate him, which means that they put a tube down his throat that they can hook up to a breathing machine. They had to continue suctioning out his mouth so that he wouldn't choke on anything. While Ryan was intubated, his chest was unilateral and you could tell that something wasn't right. He had several chest X-rays. One of the nurses asked me if I was there alone and I responded that I was (Thomas had to stay home with the other 2). She let me know that they were going to transfer Ryan downtown to Greenville Memorial and asked if I needed to call someone to drive me down there. I realized at that moment that THIS IS SERIOUS. They are not going to be sending us home soon. The ER doctor also told me that they were getting the helicopter to transport him and that I would not be able to ride in it with him. Hearing those words (and even now, just thinking about it), seriously makes my heart stop.
I called Thomas and told him that we needed to find someone to come over while Stokes and William slept so that he could meet me at the hospital. MaSha ironically was in Charleston to help out with Leece and Madison for Tara and Matt, which would obviously be our first choice of person to call in this type of emergency. I thought about texting a neighbor but Thomas said he was going to call our family friend (and my 2nd mom), Carole. It was probably around 11 or 11:30 at this point. When I checked back in with him, he had gotten in touch with Carole and she was on her way and he was going to meet me at Greenville Memorial.
Someone at the ER then told me that the conditions were too foggy for the helicopter but they would still send Ryan by ambulance and I could ride with him. While all this was going on, a nurse was still bagging him for his breathing and they were in and out of the room, running tests, administering medicines, asking questions, drawing more blood, etc, etc, etc. It was all so confusing and hectic, We were waiting on the PICU Critical Care team to arrive for the transport. I was crushed that we needed a critical care team. I just wanted everything to be OK and for this whole event to be over and especially for Ryan to just be FINE and HEALTHY.
When the Critical Care team, which consisted of a Pediatric nurse and ped respiratory therapist, got there, they took over and spoke in medical lingo with the ER staff. It felt like everything was moving a hundred miles a minute but it was the middle of the night by this point. They also told me that I was unable to ride with Ryan in the ambulance, due to liability. I almost lost it. I didn't want to leave his side. I felt so totally helpless. They explained that the first order of business once we got to the hospital was to go for a CT scan. The on-call doctor was going to meet them at CT and as soon as that was done, they would go to the PICU and get Ryan admitted. PICU is the pediatric intensive care unit. They then moved him from the ER bed to the ambulance stretcher and I walked with them right alongside Ryan to the ambulance and watched him get loaded in before going to my car. Then the ambulance took off with lights and sirens on.
To be continued...
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