(It's lengthy...)
I've decided not to refer to my kids as being 'healthy' anymore. I'm just gonna embrace the fact that they've got some health issues.... they're somewhere between 'healthy' and 'medically fragile'. Where I work, I see some majorly sick kids who are definitely
not getting better anytime soon... in comparison, my kids, with their 'issues' seem so healthy... probably because I know their issues don't pose major day to day problems, and that, in time, they won't be a problem at all! But apparently, by repeatedly claiming that my kids are 'healthy', I've offended fate... or the gods... or karma... something...
This week was spring break... we decided that since Nathan was working, it would be fun to stay a night at a hotel close by so we could go swimming... Nathan would go to work the next morning, I would (be lazy and) check out a little later with the kids. Fun family memories, right? Well, as it happened, Monday night was the NCAA mens basketball championship game... and Kentucky was playing in it, so of
course Nathan was super excited about the game. The plan was that we would swim for a bit, go upstairs and have dinner during the first half, a few minutes before halftime I'd go back down to the pool with the kids- Nathan would join us for halftime, then take Hailee back up for the second half to get her ready for bed, and then I'd come up after a while with the boys.
I poured my hugely pregnant self into my swimsuit (eeesh), and helped Eli and Hailee into theirs- Bryson and Dallin were ready in a flash, and Nathan was getting the tv onto the right channel, so it would be all set when we came up- he hadn't even taken his swimsuit out of his bag and since the boys were positively giddy with anticipation, I started down with them and Hailee while Nathan got ready.
All three boys had their life jackets on, and Bryson and Dallin jumped right in... Eli was a little more hesitant because he likes to have someone to jump to- while he can keep himself upright just fine with his life jacket on, he just isn't quite as confident in a big pool by himself- so he went over to the shallow end to walk in with Hailee and me. WOW! the pool was very cool- it always is- and always takes a few minutes for me to 'ease' my way in, but once I'm in, it's fine... Eli was equally as surprised by the water and stood on the top step exclaiming, "it's coooooold!" He tried for the hot tub, which I quickly put a stop to, because I know that once one kid gets in, they all do, and then actual swimming is pretty much over... I was counting on them getting some major energy out so they'd sleep in in the morning *wink*wink*
Much to Eli's excitement, Nathan came down after a minute and jumped right in- Eli hesitantly jumped in to him (he already knew how cold the water was!)... by this point, I was in about 1/2 way. Nathan came over, with Eli in tow and took Hailee from me, Eli was floating around near me as I was talking to Nathan and then kinda tucked his legs up and rolled onto his tummy with his face in the water- as if he was going to swim on his belly. Now, none of my kids have a problem putting their face in the water- they all do it in the bathtub, and in the pool/lake/wherever there is water and they can... so what I perceived as Eli 'swimming' didn't seem completely odd, but it was a little strange, because he wasn't making any swimming motions- but he wasn't struggling either. Nathan and I looked at each other with the same amused/quizzical look about what Eli was doing, and after 2 or 3 seconds, I pulled him up- he was alert and seemed fine, so I bobbed up and down in the water with him for a few seconds (trying to get my mid section in a little deeper), and then he pushed away from me and did the same thing again, pulled his legs up and rolled onto his tummy with his face in the water- this time, I pulled him up right away (partly because there were other people in the pool close by, and it just looked
bad, like I was letting him drown) and told him not to do that anymore- there was something that seemed strange about what he was doing, but I dismissed it... I was holding him close to me when he started to shiver- pretty violently- Hailee was shivering too, so I relented and asked if he wanted to get in the hot tub, he shook his head and said, "yes"... I helped him to the stairs (since he's too short to touch the bottom of the pool) and he walked over and got into the 'hot' tub... I was next (only up to my knees, thank you), and was quickly followed by the rest of the fam.
I actually started looking around for a thermometer, because, while pregnant women and hot tubs don't mix, really, the water was like a warm bath... I was pretty sure I'd be able to sit in it without fear of overheating. Eli, who had been standing on the 2nd or 3rd step- only up to his knees or so, turned and got back out and went and stood at the edge of the pool with his back to us- Nathan and I didn't know what he was doing, so we both started calling for him- but there was no response, he was just staring very intently across the pool. It was pretty loud in the pool area, all echo-y like indoor pools are, and I figured he couldn't hear us. At this point, Bryson got up and shook Eli's hand, and pointed back at the hot tub, telling him that we were all in the hot tub. As Eli started to turn around, Bryson ran back and jumped into the hot tub- Eli took one or two steps and then face planted on the concrete- he made no attempt to put his arms out to catch him, and he hit his head pretty hard. I jumped out of the hot tub and picked him up and sat on a chair nearby with him on my lap. Immediately my mom alarm went off- he wasn't grabbing for where he'd hit his head (which had a nice little abrasion on it), and he wasn't crying. He was just staring off again at the far end of the pool.
The thought crossed my mind that maybe he'd seen something strange (like a kid drowning on the bottom of the pool), but that's not where he was looking... I told him to look at me- he didn't. I repeated myself, more firmly- no response. He just sat on my lap, with his head turned away from me, and his eyes looking as far to the right as he could. My mom alarm really started sounding... I told him again (very seriously) to look at me and that if he didn't he'd be in trouble- he didn't budge, so I rotated him on my lap so his head would be turned toward me- he turned his head, looking straight through me and looked the other way. I glanced down at Nathan (still in the hot tub) and said, "something's wrong..." I stood Eli up in front of me and suggested we take of his life jacket and get him warm, prompting him again and again to help, but he just stood there staring to the side with his arms hanging limp- when the life jacket was merely hanging on his shoulder, I asked him to again to take off his life jacket- no attempt. I picked him up and grabbed a towel, thinking I needed to warm him up- I asked him to dry his face, and it was then I noticed him drooling... At that point, I knew something was seriously wrong- I grabbed a key card and looked over at Nathan and told him to bring the kids up and I left the pool area... though he couldn't hear me, he later said the look in my eyes said it all.
A few steps out of the pool area and Eli started seizing in my arms. It wasn't the type of convulsions usually associated with a seizure, but rather some joints/limbs were limp while others were stiff as could be. His eyes were open, but rolled back in his head, and his breathing was very labored, almost grunting or choking.
I ran up the steps to the second floor, but I have no idea how I found or even remembered what room we were in- when I got into our room, there was no doubt in my mind that I needed to call 911- I layed him down on his side (because of the copious amounts of secretions coming out of his mouth) and dialed- I was frantic... I'm sure I was very difficult to understand because my mind was going 1000 mph as I'm seeing my little Eli
posturing (which is typically a very very bad sign of severe brain trauma)- I told the 911 operator that we were swimming and he was acting strange and then he fell and hit his head... I don't remember what else because I was trying to assess him and figure out
what in the world was happening! He was breathing (though it was very labored and irregular through all his secretions) and had an extremely rapid pulse- so fast I could barely differentiate beat to beat- was he having a stroke? was he having a heart attack and in
v-tach or
v-fib? had he somehow aspirated two lung fulls of water when he'd been putting his face in the water?
It was the worst feeling in the world that despite my medical knowledge and training, I had
absolutely no idea what was actually going on, and nothing I could do for him- the symptoms he was displaying were extremely unreassuring. I really truly thought he was going to die.
Nathan and the kids got up to the room one or two minutes after Eli and I- Nathan was completely unprepared for what he saw, obviously he had no idea that Eli had deteriorated so quickly and to that extent. Bryson and Dallin had been complaining
heavily about getting out of the pool after so short a time... but when Bryson saw me and Eli, he was really concerned and started crying. Not knowing what would happen when EMS got there- I didn't want the boys in the same room- I was so torn... it could be really traumatizing for them to see some of the things that potentially may happen, but I also felt so bad thinking of them being in the other room alone and scared for their brother. It was doubly heartbreaking because Eli was laying just outside their bedroom door (that's where the phone was) and Bryson just kept opening the door, sobbing, asking what was wrong with him and if he was going to be okay...
All concept of time was gone- I remember thinking and saying over and over, "where is 911? where is EMS?" Time stood still as Eli just kept seizing- all I could do was keep him on his side so he wouldn't aspirate the secretions literally
pouring out of his mouth. It felt like forever before EMS arrived, but once there, I was trying to explain what had happened, but really kept interjecting that I didn't know WHAT had happened- inside, I had this horrible feeling that the paramedics were thinking that I was just a negligent mom and had let him drown... All the while, it was so frustrating that they weren't really
doing anything for him, other than giving him blow-by oxygen and trying (and failing) to start an IV... a paramedic had turned him onto his back to listen to his heart and lungs, but after a few seconds, Eli started turning blue because he couldn't clear his airway for all the secretions- I turned him back on his side and explained that he needed to stay that way so he could breathe! After the fact, (days later) a paramedic told me that they had only been told by 911 that it was a fall, not that it was a child, or that he was seizing or even that a pool was involved- so they came up expecting a geriatric who'd broken a hip or something- they were totally surprised by what they found when they arrived- if they'd know it was a kid, they'd have brought up all their pediatric stuff- certainly an entire different set of equipment if they'd realized it was a serious as it was.
I really remember very little interaction with EMS- just a few things that jumped out at me, like Nathan indicating that we wanted to go to Sacred Heart, that I would ride in the ambulance, and hearing at one point that the ambulance was 4 minutes out- at that point, it suddenly occurred to me that
I had to change out of my bathing suit... it seemed so shallow to me to be concerned about that, but in retrospect, I'm sooo glad I had the soundness of mind to change- can you imagine a big ol' pregnant lady waddling around the ER in a bathing suit in 40 degree weather? ummm, erase that mental picture from your mind please. I swear, I have never gotten dressed so quickly and efficiently in my life (especially when all clammy and peeling off a wet swim suit)... A few moments after I came out of the bathroom, a voice on the EMTs radio said the ambulance was 30 seconds out- the paramedic picked up Eli and carried him out, saying that we didn't have time to wait for them to bring a stretcher up... I quickly followed-
Once outside, they strapped Eli to the board in back of the ambulance- immediately secretions were coming out his nose and mouth- they were so involved with getting out supplies (that they hadn't had upstairs) and relaying info to the ambulance team that I had to tell them to suction him. The paramedic/fireman who had carried Eli down from our room rode along in the back of the ambulance... I really wanted to ride in the back, and I know that it's allowed, but they were adamant that I ride in the front- I wasn't surprised and didn't feel like we had time to argue.
From the front seat, all I could see were Eli's feet and the paramedics back who was working on Eli... and another paramedic handing the first paramedic an ET tube (to intubate him), only to have it handed back to him, over and over and over-
why couldn't they intubate him? And WHY did the stupid cars on the freeway not get out of the way?!? It was so ridiculous how long it would take a car to realize that there was an ambulance behind them, and then get out of the way!
I tried thinking of who I could call to take the kids so Nathan could come to the hospital- but ALL of my family (that I could think of) was out of town... I went through my siblings three times, but I just kept thinking that all of them were out of town... I called my mom- she and my dad were in McCall, Idaho- she couldn't come help, but I knew I needed to call her and that we needed their prayers- just like
2 years ago, when I flooded my bathroom and I called her hysterically, she could barely make out what I was saying... I tried explaining what was going on two times, but my mind was all over the place... and just like two years ago, she called my brother Dan- (who
was in town) and explained that something terrible had happened and that he needed to get to Sacred Heart right away...
I finally realized I could call my sweet neighbor Tiffani (and totally stress her out!)- she ended up meeting Nathan at his office (roughly 1/2 way between the hotel and hospital and right off the freeway)- she drove our van to her house with the kids and Nathan took their car to the hospital... what a wonderful friend to drop everything so suddenly and be so readily willing and able to help (even if situations like this completely freak her out! Thank you Tiffani!)
Pretty sure the ride downtown has never ever ever taken so long... even the paramedics in the back of the ambulance asked very impatiently on several occasions, "how far out are we?" Apparently, they'd given him
succinylcholine to paralyze him and make his jaw relax so they
could intubate- but it didn't do a thing to relax the muscles, and they couldn't intubate with a clenched jaw- all the while, he kept seizing.
When we finally got to Sacred Heart, I was surprised that they let me be in the room while they worked on him. It was chaos initially, but controlled chaos- there definitely was much more that they were actually doing, but so many people working on him at once. It was so touching to me how they talked to Eli and called him by name throughout everything- he was completely out of it, still seizing, but they were telling him what they were doing anytime they touched him. His heart rate was in the 190's and his blood pressure was through the roof- at least his oxygen saturations were stable in the mid 90's. When the ambulance team was getting ready to leave, the paramedic who had carried Eli to the ambulance put an arm around me and said, "good luck with everything"- it was very heartfelt and really meant a lot at the moment when I had no one.
After what seemed like an eternity, Eli started to relax and calm down- his eyes 'opened' (they'd been open, but rolled back in his head) and he was gazing around and blinking- I stood next to him, calling him by name and holding his hand- his eyes started to turn to my direction, but there was no recognition in his face- and they he started seizing again- this time was the worst- his heart rate skyrocketed to over 220 bpm and his oxygen sats dropped into the 30's- he was given a dose of IV ativan to stop the seizure, but didn't respond- they were bag/mask ventilating him, but he wan't responding- the ER doctor ordered to intubate so they could induce a coma- He'd been seizing for almost an hour at this point- while they were preparing for intubation, the doctor ordered for a second dose of ativan, and this time, it worked- Eli relaxed, and his vital signs started to stabilize. Since he was breathing on his own, they put off intubation and watched and waited. Eli remained unconscious, but the tension in the room started to drop too. After a few minutes, and EKG was done- it looked normal.
I didn't even see my brother Dan when he arrived, just a blur of someone and then he was wrapping his arms around me and hugging me- it was so good to have him there. He told me after the fact, that he when he saw Eli, he was so scared for him- he was so lifeless lying there on the table- eyes open, but completely unresponsive. After a bit, the doctor deemed Eli stable enough to go for a CT scan of his brain- he remained on a monitor and oxygen mask, and a dose of ativan and intubation equipment accompanied us for the short trip to radiology down the hall... as soon as it was done, our nurse told us on the way back to the ER that the CT looked good- the radiologist had been in the room, and he said there were no masses, bleeds, encephalitis etc.
Nathan arrived shortly after we returned from radiology- we sat and recounted the chain of events, trying to figure out what in the world had happened... we realized that we shouldn't have been alarmed in the pool when Eli went under because he wasn't struggling and when I pulled him up, he wasn't coughing or sputtering... but that from that point on, he started a rapid decline in his mental status and level of consciousness. The ER doc came in several times to ask more questions, give us results and answer questions. Eli's labs all looked perfectly normal- except for his pH, which you'd expect to be off after that long of a seizure. His temperature had been 99.6 on arrival- but he'd been seizing for 25 minutes by then, so an elevation would be expected. Over and over we were asked if he'd been sick, had a fever, been acting strange prior to the events in the pool.... I know he hadn't had a fever because I'd helped him get into his swimsuit at the hotel- maybe he could have had a low grade fever, but certainly not high enough to trigger a febrile seizure! The doctor told us that kids are allowed to have one seizure with an unknown cause that everyone just kinda shrugs their shoulders at and says, 'that was weird...' and they usually don't happen again... but, they also usually only last for 1 or 2 minutes, not an hour.
Hours passed and Eli didn't regain consciousness. His vitals were stable, and he would withdraw slightly from painful stimuli, but was otherwise completely unresponsive- it was unclear if he was still seizing sub-clinically.
I called to check on the kids at my neighbors house- she said Bryson cried the whole way home, but that he was pretty distracted by video games once they got to her house... Dallin seemed completely oblivious to the situation with Eli- he was just excited to play video games with her kids. Hailee was tired and grumpy, and we decided that Nathan would leave to bring the kids home and sleep in their own beds- we felt like it was important for them to have one of us with them (even if 2 of the 3 kids had no idea what was going on).
After another hour, the doctor decided that we should do a lumbar puncture (spinal tap) to rule out meningitis. Eli was still unresponsive, but the nurse explained to him that we were going to roll him on his side and hold him very very still and that he'd feel a little poke in his back... as the doctor was numbing around the puncture site, Eli started to respond from the injections... "outsch" (ouch) was his first word... soon it escalated to a little more vigorous complaining and attempts to squirm away- and then his eyes started to open, and he was trying to pull the oxygen mask off with the hand that was pinned to the bed near his face- I cried and cried and reassured him that this would be over soon and that he needed to hold still and they were trying to help him. The doctor was encouraged by the color and clarity of the cerebral spinal fluid and by how readily it flowed- all good signs of healthy csf. The sweetest child life specialist was trying so hard to distract Eli, but he was a bit too sleepy still to be distracted- he was very interested in the prospect of a popsicle when they were done though- he was hungry. By the time they finished collecting the sample, he was full on protesting, and I was so happy at his complaints!
He was pretty out of it when they sat him up- disoriented, sleepy, confused... the promised popsicle was delivered, and with eyes half open, he started eating it-
Nice little bump on his noggin??
I loved seeing his hands and mouth trying to coordinate their efforts to get a taste... and then, after a few licks, he looked around and drowsily said, "hey, where's the pool?" I explained that he'd gotten sick at the pool and that we were at the hospital- he cocked his head to the side and with eyes closed said, "no mom, you dus (just) kiddin!" I laughed through my tears and called Nathan- as the phone was ringing, Eli was trying to switch the popsiscle from one hand to the other, his hands were about three inches apart but the empty one was trying to grasp the stick- just as Nathan answered the phone, Eli exclaimed, "look! dat's weird!" It was the first thing Nathan heard and he broke down too- asking if that was really Eli's voice...
It was so reassuring to see Eli's brain 'rebooting' and his coordination and level of consciousness return to normal. The child life specialist brought in some movies- Eli chose
Madagascar. He finished his popsicle, talked to me a bit, expressed concern and distress over being naked under the covers, had me scratch his back, laughed at the movies' silliness, and after an hour or so, fell asleep. The doctor came in and said the initial results on the LP were normal and that we'd be transferred upstairs to the peds intermediate unit.
Just after 12:30am we were taken upstairs to the floor- Eli slept through the whole thing- he only woke when I picked him up to switch him to the hospital bed from the stretcher. It occurred to me that I hadn't eaten anything since lunch (I use that term loosely, it wasn't much), but I didn't feel hungry- I was more tired mentally and emotionally than anything.
Around 2:30, I helped untangle Eli from the monitor leads and ended up taking his temp because he was so hot- his temp was 102.8, so I had the nurse give him a tylenol suppository- even though he had just gotten back into bed after going potty, he was too tired to protest.
I maybe slept for 2 hours when the nurse came in explaining that we needed to wake up Eli so he would be sleep deprived for his
EEG. To my surprise, he woke up fairly easily-
once I offered to let him watch tv, he was all smiles! He was thirsty and obviously tired, but he stayed awake on his own- we cuddled in his bed, I coerced food down him (and eagerly engulfed the leftovers... my appetite had returned!), and talked to many many many residents who were all interested in assessing him. Our family's regular pediatrician came in and stayed for at least an hour- she was so great to sit and listen to my concerns and offer support!
At one point his nurse came in and said the EEG would be soon, that "he was 2 or 3 in line"- Eli quickly responded, "no I'm 4!"... he thought she was saying that he was 2 or 3 years old- and I was so happy to see how quickly he was hearing, decoding and responding!
Eli was only bothered by the EEG while the tech was applying the electrodes...
and that was only because occasionally he had to turn his head away from the tv...
during an EEG, it's good to have a measuring of an awake period, a drowsy period, and a sleep period, so after a while, the tech told Eli to pretend that he was going to sleep, and that if he did fall asleep, it would be all right- Eli (almost relieved) said, "oh-tay" and happily went to sleep. He slept through the remainder of the study, the electrodes being removed and the neurologist coming to consult. She was very happy with all the results of the EEG and all the other tests, and though she saw no cause for the seizure, that really was a good thing... a little unsettling and lacking in the nice resolution I wanted, but certainly better than a brain tumor or meningitis or even needing long term seizure medications. She wanted a few more labs and an MRI done and indicated that we most likely would be staying another night for monitoring given the duration of his seizures despite medical treatment. She was also happy to give us a prescription for a gel to inject up his bum if he does it again- I was happy to have that, especially considering how often we go camping in the summer out in the middle of nowhere. A little peace of mind since it didn't look like we would find out why this had happened.
Since it was already mid-day, his nurse informed us that we were squeezed in at the end of the MRI schedule- the last one available that they could still sedate him- while I wasn't crazy about the idea of
more sedatives in my boy, I knew that he needed to be absolutely still for far longer than he'd be able if he wasn't drugged, even with the sleep he'd been readily embracing since the evening before. Eli's lunch had been ordered up when the nurse came back in quickly telling us to NOT eat... they were squeezing him in NOW! It was a mad rush to get the 'paperwork' done to get him downstairs- I ended up doing the pre-MRI screening and checklist on the computer under the nurses log-in while she started a new bag a fluids for his IV bolus- kinda convenient that I work there and knew the program! When we got downstairs, the MD who was doing the sedation almost wanted to cancel it til later because Eli had had a few sips of water and a bite of a popsiscle 30 minutes before... luckily he didn't.
The MRI took forever it seemed, and I was very glad to be in an almost empty waiting room- I fell asleep waiting! The recovery room seemed to take forever- I'm sure that he took a little longer to wake up than the nurse was expecting, because she started to stimulate him a little- which they generally don't do... though tired, Eli was happy to get to eat when he did wake up- he devoured a bag of animal crackers on our way back upstairs. More waiting and our hospitalist came back with the great news that his MRI looked fine, his labs showed nothing abnormal and that the neurologist had cleared us to be discharged that night if we were ready... she indicated that she could definitely keep us another night if I wanted him to be monitored for a little longer- I said we'd rather go home, and then asked Eli if he wanted to go home [tonight]- he shook his head in agreement and said, "yes" after a brief pause, he said, "actually, I want to go home right now" It was priceless.
That night, all three boys ended up sleeping in my room- Bryson and Dallin both had 102+ fevers when we got home, and Eli's temp was creeping back up too... I gave all of them motrin and we all crashed- and I slept a little better knowing they were all so close. The next day, Bryson and Dallin both took naps of their own choosing, and Eli took 2.
Looking back, I'm pretty glad that his brothers had fevers, because it does make me much more believing that Eli's seizure was fever related... and that maybe the duration was exacerbated by the sudden drop in temp by getting in the cold pool, and then hitting his head... So long as it doesn't happen again, I don't need an explanation, I guess. But just in case, we have our nice little $268 prescription that will never be too far away...
I thought that maybe it was just me, but Nathan has commented several times too, that since Monday night, it's almost as if Eli has a new zest for life- he's just so excited and energetic (despite the naps he's been taking everyday)- I'm so thankful that he's still here, and that I'm his mama and for all of my kids- I kinda have a new appreciation for the fragility of life right now- and just how blessed we are.
But really, do we really
have to meet our ginormous deductible every.single.year??
