Saturday night started out like any other. I put Gerry to bed around 8:30, a little later than normal because we had been visiting my parents and my brother. Bailey was spending the night with Scott's parents, and he and I were watching tv in bed. Around 11:15pm Gerry woke up crying. He does this every once in awhile, so we decided to leave him be for a few minutes to see if, like always, he'd fall back to sleep on his own. After a minute, his cries turned to screams like we'd never heard before and I jumped out of bed and ran down the hall to his bedroom. He was lying on his belly in his crib, which is nothing new (he falls asleep on his back, but always rolls over to his belly in the middle of the night), and he didn't roll over when I leaned over the side of the crib and touched him. He was just laying there crying, completely unable to lift himself or roll himself over. I grabbed him up out of the crib and ran down the hall to our bedroom and told Scott, "I don't think he can move his arms." Scott took him and snuggled him to his chest, rubbing Gerry's back and murmuring soothing words in his ear. He wasn't calming down and still wasn't moving his arms; not lifting them to reach for us or to hold anything. Then he stopped screaming and got this blank look on his face. He stared into space for a second and then his upper body started shaking back and forth. A minute later his eyes came back into focus and he started screaming again. Then the blank stare and rocking back and forth. This pattern repeated for about 25 minutes, with him going out of it and rocking about 6 times. After the 4th time, he wasn't screaming in between anymore--just silent. Scott and I got dressed, grabbed the diaper bag (always have one packed and ready to go, moms!) and took Gerry to our local ER.
The ride to the ER was a quiet one. Gerry didn't speak, didn't babble or giggle like he usually does in the car. He moaned a few times, but was mostly silent. We got there around midnight and were immediately taken back. Vitals were taken, along with Gerry's temperature (he'd had a low fever around 7:30pm but a dose of Advil brought it back down to normal), and the doctor had us change him into a hospital gown...the teeniest, tiniest little hospital gown I've ever seen.
After 2 1/2 hours in the ER and a very thorough explanation to the doctor and nurse about Gerry's "episode", it was determined that the doctor here didn't feel comfortable diagnosing or treating Gerry since she hadn't seen the episode herself. She made a call down to Children's hospital in Philadelphia, and an ambulance came to transport us down there so he could be evaluated by the Pediatric Neurology team there.
We loaded into the ambulance around 2:40am and made sure that Scott was following behind us in our car. By this point, Gerry had been awake for 6 hours and I knew he was exhausted. He was bundled up in his car seat and kept dozing off, but then his eyes would pop open and he'd look around. I kept talking to him and reassuring him that I was there (who knows if he understood what I was saying or not, but at least he could see me and knew he wasn't all alone) and he'd start to doze off again but then pop back up. We made it to CHOP a little after 3am and were admitted, taken to our room, and met with another doctor and nurse. While we were relaying the events of the night before to the doctor and nurse and they were checking his vitals, Scott noticed that Gerry had a rash on his back--and his arms, legs, back and belly. His cheeks were really red, too, and it turned out he had spiked a fever of 103 in the ambulance on our way over. He was given Tylenol for the fever and rash (which both cleared up in about an hour) and then it was a waiting game. We spent the next few hours (unsuccessfully) trying to get Gerry to sleep, but he wasn't having it. He wanted to be held the whole time we were there, and he cried every time a doctor or nurse came near him.
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| It hurt my heart to see him looking so incredibly small in this big hospital crib |
At 6am I gave up trying to get him to sleep in the crib and went down to the parking garage to get his stroller from the car. I made him a bottle, snuggled him up, and rocked him back and forth in that thing for about 10 minutes before he finally fell asleep. Scott was passed out on the couch so I wheeled Gerry over next to him and snuck down to the cafeteria for some much-needed caffeine.
I got back to our room about 15 minutes later and Scott and Gerry were both still asleep. I turned on the news, called Scott's parents to check up on Bailey, and downed my coffee. As I was finishing up, the doctor came back to the room to let us know that they needed to draw blood and do an EEG in about an hour or two. Poor Gerry was only going to get about 2.5 hours of sleep before we had to wake him up and put him through hell.
As expected, the blood draw was horrible. Thank God the nurse knew what she was doing because Scott and I were a wreck. We laid Gerry down in that giant hospital crib, and Scott held his flailing legs still while the nurse held his arm out and I positioned myself right up by his face. He was scared and he cried, and as soon as the needle went into his arm he screamed and thrashed like I've never seen. I kissed his cheeks and wiped his tears and stroked the arm that wasn't being stuck with a needle, all the while whispering in his ear that I was so sorry and that it would be over soon. Two tubes of blood were drawn, and Gerry looked into my eyes and cried the whole time. I felt so guilty and so sad for him and so utterly helpless. He was scared and he hurt, and I couldn't do anything but stand there and watch. As soon as the nurse put some gauze and a bandaid on his arm I scooped him up out of that crib and snuggled him as close as I could. He was still crying and squeezing me so tight and, I'm not ashamed to admit this, I cried too. I know it was necessary, all the testing and poking and prodding they were doing was necessary, but it didn't make me feel any less awful and it didn't make me hurt any less for my baby.
After the blood draw, Gerry and I walked down the hall to the play room. He was completely worn out by this point and couldn't have cared less about all the cool toys and books in the room. He snuggled up in my lap with his blanket from home and watched Blue's Clues on the tv. He didn't move except to sigh every once in awhile or to rub his soft blanket against his cheek while he leaned against my chest. So there we sat, until he started to yawn loudly. Then I scooped him up and carried him back to his room for a bottle and a nap.
An hour and a half later, it was time for his EEG. The nurse who would be doing the test, Irene, was quite possibly the nicest woman I've ever met. She explained to us how the test would go, and tried to get a grumpy Gerry to smile while she spoke with us. Everything was fine until we walked down the hall and into the room where the EEG would be performed. It was a small room with a long table in the center. The lights were dimmed and quiet music was playing, and Irene reminded me that this wouldn't hurt a bit and that she could start as soon as I laid Gerry down on the table. Simple, right? Except that as soon as I loosened my grip on Gerry he screamed bloody murder...and didn't stop for 30 minutes while the EEG was taking place. Irene ended up having to fold him up in a papoose, which terrified him and made him scream even louder, but it was the only way to keep him from reaching up and pulling off the electrodes attached to his head. And so went 20 minutes of him non-stop screaming. He had one arm free, and kept reaching for me with his chubby little hand. I leaned down and snuggled against his neck, whispered and sang in his ear, tried to make my voice as calm and soothing as possible even though inside I felt sick and sad for my baby, and guilty that I was putting him through this. The whole time he was crying, he kept looking into my eyes and I could feel how frightened he was. How exhausted. How done. So I did the only thing I could do in that moment. While Scott stood next to me and rubbed Gerry's feet, I held his hand and wiped his tears and kissed his sweaty little cheeks and held back my own tears as best I could. We were able to unwrap him and hold him for the last few minutes of the EEG, and Scott rubbed his back and played Peek-a-boo with him while I held him, and in minutes he had calmed down.
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| Smiling again after blood work and an EEG |
We went back to our room and cleaned him up, then gave him a bottle and got him ready for yet another nap (poor boy hadn't slept at all the night before, and was only able to catch an hour here and there before another nurse or doctor woke him up for vitals or more testing). Luckily, there weren't anymore blood draws or electronic tests that needed to be done. The neurology department was reading the results of his EEG, and our job was to wait. Gerry had lunch, Scott and I had coffee, and my sister and brother-in-law brought Bailey by for a visit (she had spent the night before at her grandparents' house, which couldn't have worked out better if we'd planned this whole hospital trip). A little while later, a resident with the neurology department came to talk to us. He explained that all of Gerry's blood work and his EEG looked normal. He had a few extra brain waves on the EEG, but we were assured that this wasn't anything to worry or be concerned about. It was determined that his seizure was most likely a one-time thing and that we shouldn't expect it to happen again. We were given instructions on what to do if, by chance, it did happen again and told that we'd be discharged in a few hours.
We made it home around 4:15 Sunday afternoon, ate an early dinner, and were out cold before 6. We slept for a solid 16 hours, then woke up and got ready for our follow-up appointment with Gerry's primary doctor. After the appointment, we picked up Bailey, who had spent Saturday night at my sister's house, and took her and Gerry out for lunch. Scott and I have been keeping a close on Gerry ever since, but he seems to be his usual, goofy self. A teeny bit grumpier and clingier than normal, but he could be teething. And who can blame him for being clingy after spending a day in the hospital?
It's been almost a week since his seizure, and Gerry seems fine. Back to tearing the house apart and climbing on things he shouldn't and leaving toys in the refrigerator. He still has a tiny mark in his elbow where he had blood drawn, but otherwise you'd never know he spent his weekend in the hospital.
I keep going to bed each night and expecting to be woken up by him screaming or seizing in his crib, but he's back to sleeping through the night again. I think it's going to take Scott and me a little while longer before we stop worrying about him, stop holding our breath every time he takes a tumble, stop staring at him to make sure he's okay. But Gerry's a trooper and he's back to his goofy, smiley self. The house is a mess, and there's a trail of toys and DVDs that he's left in his wake. And Bailey's not ever safe from his quick little hands, ready to reach out and swipe her bink or a snack before she even realizes what's happening. All is back to normal over here and we couldn't be happier.
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