Scott’s Seizure Part 1

The little instances that fill up our whole days, are the same little moments that can change our lives forever. I have replayed all those instances of the past few days over and over in my mind, and have sat down to write this post several times. Emotions get too thick and I walk away from the computer, leaving an empty screen, ironically similar  to the same empty feeling I have in the pit of my stomach. I used to think that when the trials of life would come, that I would be ready. I would be strong. I would somehow be able to hold it all together. I have realized that that isn’t always what is expected-all our Heavenly Father wants is us to be able to turn to Him for help.

I have tried to separate, “just the facts” and write something that will be informative, something to keep everyone up to date, and somehow take out the myriad of emotions we are feeling right now. In life that’s just not how it works though. Our lives are a bit emotional charged right now, and the two just can’t be separated.  Life is hard. Events in life are hard. And sometimes as hard as we try we don’t always stand tall and handle adversity with grace. I have been blessed to feel that that is okay too. This is a detailed account of what happened. If it’s just too much to stomach, the nice short version is-Scott had a seizure that lasted 25 minutes, he continued to have 6 more they had a hard time stopping, he had a fever of 105 that started them, he stayed at the PICU, he’s home and doing better for now. For us though, we need the details,  we need to have it written down if it ever happens again, we need to be able to look back and see the blessings that we do have from all of this, and we have 8 people in our home that need to heal. Writing this and reading this helps us do that.

I wish I could write not so one sided, not so negative, not so pained-but I can’t. This has been one of the hardest things we have ever had to go through, and I am just trying to understand. Have people gone through harder things –yes! Is this the worst thing that could have happened-no! Am I somehow being ungrateful for dwelling on the hard things right now-no! But for us right now, this is a big deal and a hard thing to work through. Emotions and hurts are real. Our Heavenly Father knows that and allows us time to heal no matter how long that takes.

Through all of this I have been able to see that my brother and sister in law are my heroes. Their daughter Lauren in my hero. www.lauren2-lauren.blogspot.com My heart hurts that even though we have only had to go through this once so far-they have to live it everyday. My sister-in-law said that you find strength beyond your own to get through. Right now, that’s about all I can rely on.

On Tuesday February 9, Scott had a seizure. It was the first of seven he experienced in the two hours that followed, and something I thought I would never have to have one of my children experience. Fear, worry, love, ignorance, humility, faith..all emotions that were running rampant through Aaron and mine’s mind. In an instant, you realize how mortality is not in your hands at all. As much as I wanted the doctors to do what they could, I knew that my prayers that were flooding Heaven at that moment were all that really mattered.

It started as  an ordinary day-playing, laughing, hugging, loving, running around, discovering new toys, giggling… Scott had been having a typical 14 month old style day. He had breakfast, played in the morning with Abby, took a short morning nap, got up and played with Abby and I on the floor, read books together, let me take some pictures of him, had a good lunch, took a nap, and then we went to pick up the kids from school.
When we came back he was acting a little bit grumpy, he just wanted me to hold him. He seemed a little uncomfortable on my lap. I tried to feed him a little more baby food and he ate a little bit, but then back on my lap he seemed kind of restless. He kept taking his binkie out of his mouth and was acting like he might throw up. I thought maybe he just had a tummy ache. I felt his head and he felt a little bit warm. It was nothing I would have even thought twice about going to get the thermometer to check or give any Tylenol for.
I was at the computer holding him and Brianna asked if she could hold him for awhile. She went to the couch with him and laid down to hold him and let him rest. About twenty minutes passed and Brianna said he felt kind of hot so she kept the blanket off of him (she later told us this). Aaron had called and was on his way home. Then Brianna started to scream, “Mom, Scott is having a seizure! Scott’s having a seizure”

I ran to the family room just a few steps away and grabbed Scott from the couch. I yelled for Brianna to call daddy right away. I had brought him in the kitchen, for what reason I don’t know now, maybe to be closer to where Brianna was calling? To see him in better light? I looked at the kitchen clock to see what time it was. I knew I needed to know how long the seizure had lasted. 4:53pm. Brianna  got Aaron on the phone and repeatedly said, “Scott’s having a seizure.” Luckily Aaron had just pulled in the driveway. A direct blessing from our Father in Heaven I know.

He ran into the door as I was walking back into the front room. We put him on the floor and Aaron told me to call 911. When we laid him down he was burning up. The kids were funneling into house, crying, and being as scared as we were.  Aaron calmly told them to go to their room and say a prayer. Aaron didn’t hesitate a moment-he went to get his consecrated oil and gave Scott a blessing. The strength and character of a person is sometimes manifest clearest in the face of adversity. Seeing Aaron then showed me this good man’s heart. Rely on the Lord.

I looked at the clock-5minutes passed, 6minutes, 7 minutes…what was taking the ambulance so long? Scott was still seizing. As the minutes ticked by my worries intensified. Longer than 5 minutes didn’t seem good. Poor Scott was breathing hard, and I was worried he may stop breathing. His little cheeks seemed swollen a bit. I’m not sure if it was from all his muscles being tense or what. Is he hurting right now? My heart hoped he wasn’t. Finally I could hear the sirens in the background. Austin went out the front door to meet them, and in came a stretcher. They asked how old he was, and if he was still seizing. As they loaded him up and started wheeling him out the door, Aaron asked if I would be going with him in the ambulance. We decided I would go and Aaron would call for someone to watch the kids and follow behind. Scott looked so little on that big stretcher. Too little to have to go through this.

The next 20 minutes became a blur. Little pieces engraved in my mind.

  • Sitting in the front of the ambulance, watching  the paramedics close the door and seeing Aaron watch it close. Oh my brave husband. How he could let them drive away with his son-I don’t know. Strength beyond our own.
  • Looking in the rearview mirror and seeing our neighbor come out of her house.
  • Seeing them put an IV in his little arm.
  • Watching them cut off his shirt and putting a monitor on him.
  • Driving under the interstate underpass and hearing the sirens echo.
  • Wondering why in the world people weren’t pulling over when the ambulance was coming through.
  • Wondering why I wasn’t just one of those people in my car pulling over. Why was Scott the one in the ambulance?
  • The ambulance worker asking question after question about Scott. No, no, no, no..yes everything was normal…
  • Wondering why in the world the driver seemed to be taking the longest way possible to the hospital.
  • Hearing that Scott was stable and still breathing
  • Pulling into the hospital. 5:25pm
  • Watching one of the EMT pick up my little boy and carry him wrapped in a blanket into the hospital. At that moment-he was my hero. I hoped he was carrying him to safety.

When we got into the trauma room of the ER they laid Scott down and he wasn’t awake. They started hooking him up to monitors and cutting the rest of his clothes off. He wasn’t moving, his eyes were closed..but he was breathing.The nurse asked the ENT how long he had been seizing and he said 20-25minutes. I hadn’t been able to tell from the front of the ambulance when he stopped having the first seizure, so this was the first time I was aware how long it had been. After a few minutes he started having another seizure, and had two more before Aaron got there at 6:10. Scott was having a seizure when Aaron walked in-Aaron rubbed his arm and whispered in his ear, and Scott calmed down a bit. Daddy’s here sweetheart. They had given him already two doses of Ativan, a medicine to stop the seizures, but he continued to have them so they gave him one more dose. 6:20pm-another seizure. 6:30-another seizure. They were coming every ten minutes lasting 2-3 minutes now. He seemed to have one every time they would move him around at all. We started to notice his monitor and when he would get close to having another seizure his heart rate would jump up..205,210,225 XXXXX. A big X would flash across the screen. His heart was too fast to track.The doctor decided to give him a loading dose of Dilantin. It was another medicine to try and stop the seizures.

Aaron looked at his watch 6:40-no seizure. Our hopes increased as he made it past the ten minute mark. 13minutes. 14 minutes-seizure. This time lasting 5 minutes-but luckily the last one. We went to do a CT scan of his brain, and then back to the ER to just wait. They had taken Scott’s temperature twice since we had arrived-both times it was around 103 degrees. They had informed us he had an ear infection in both ears, probably causing the sharp spike in temperature. They had diagnosed him with complex febrile seizures. Complex because normally when a child has a seizure caused by a quick rise in temperature they will seize for a shorter amount of time, stop on their own, and come to within a few minutes. Scott had multiple seizures, longer than 15 minutes,  they couldn’t get them to stop, and as of now was sitting there looking unconscious. I wondered what that all meant.

What was going to happen? Was he ever going to wake up? Would his little heart be able to stand how fast it was beating? Would his heart stop beating? Would he have more seizures? Would they have to put a breathing tube in? (A possibility the doctor told us) Was he going to die? All thoughts we were plagued with. Some irrational, some because of lack of knowledge, some out of fear, but all very real to us nonetheless.

The person next to us came in from a car accident. There was hustle and bustle behind the drawn curtain. Moments later, there was nothing. He was dead. I wanted to throw up. What was I doing here? Maybe this was some sort of bad dream. Aaron hugged me tight.

I massaged Scott little legs which had hard little knots in them from being tight and flexed during his seizures, while Aaron would talk to him and would rub his head. They discussed whether or not they would need to transfer him to Atlanta as there is no pediatric neurologist here. In the end, they decided to keep him here and admit him to the Pediatric ICU. Aaron called home to let the kids know that Scott was doing okay. Brianna was busy helping the girls make Valentine cards to take to school the next day, trying to fill in where she could. How blessed we are for such loving kids who take care of each other. I wonder how they are hurting right now.

The CT scan results came back and looked clear, and all the blood tests came back negative. We were relieved that there wasn’t anything on his brain such as a tumor or internal bleeding of some sort. Aaron left the hospital around 9:30am as they were getting him ready to take upstairs. I decided to stay with Scott that night, and Aaron would go home to be with the kids and come back in the morning, assuming nothing happened over night. It was hard for him to say his good-byes to Scott. A very difficult and tender moment to watch.

A little after Aaron had left, Scott started to open his eyes. I think if I could have picked a few moments of pure joy in my life, that would have been one of them. The nurse had taken his temperature again before we were to go upstairs and it was up to 105.3 degrees. She wanted it to be lower before they moved him upstairs, so she had me pick him up to try to wake him up a bit more so she could try to give him some ibuprofen. She brought it in and he gulped it right down. She was as happy as I was to see him responding. She brought in some Pedialyte in a bottle to see if he would take it. He hadn’t had anything to drink since naptime and had vomited in the ambulance so I could imagine how hungry he was. He finished a whole bottle and started crying for more. Oh that cry-I’ve never been so happy to hear that cry! She filled it up again and he proceeded to finish that one too. Meanwhile we had wet blankets on top of him and I was sponging his legs, arms, and neck to try to get his fever down. It must have been an hour or so and his fever went down to 103.2. Progress. We continued to bath him, and he continued to drink his bottle and slowly start to wake up a little more. Around midnight his temperature was down to 102.5-enough to transfer him up to the PICU. I never thought I would say that we were happy to have a 102.5 temperature. All perspective I guess.

We got him checked in and settled in his little room. He had to be hooked to more monitors here than he had been downstairs, and he was not happy about it! He had his IV in, 4 external monitors on his chest and tummy, and a pulse ox gauge on his finger that they later moved to his foot. He was waking up enough to want to roll around and try to sit up and move around. He was constantly getting tangled in his cords and would scream until we could untangle him. He would try to sit up and would just topple over-some of the side effects from the medication and some from the seizure itself. He was getting very frustrated by not being able to move around. He was so tired and just wanted to lay on his tummy with his blanket tucked up by him and fall asleep. Because of his high temp-no blanket was allowed, and because of all the cords, laying on his tummy was almost impossible. The nurse had tried to bandage up his IV arm to keep him from pulling it out. She had bandaged it up, and taped a sock on it as well, but it wasn’t working. Around 2, his IV stopped pumping, so both nurses came in to try and see if there was a kink in it somewhere. They had to hold him down so they could undo the bandage and look at the tiny little catheter in his hand. While holding him down, he fell right asleep. The poor kid was exhausted. They were able to fix the IV, bandage it back up by adding a little splint and more gauze around the outside and taped the heck out of it.

Scott was able to sleep from about 2-5am. At 5, the nurse came to do more vitals-she was nice to do underarm temps and get vitals from the machines and let him sleep for the most part, but she needed a more accurate temperature now to make sure it was down. We were relieved that it was. Unfortunately, he wouldn’t go back to sleep after that. From 5-8am I wrestled to keep him from trying to climb out of the crib, fall down in the crib and hit his head, and get him constantly untangled from the cords attached to him. At around 8 he was almost asleep. They were trying to get him asleep so they could do an EEG on him. They would place little sensors on his head to measure brain activity. They had two left to put on his head and he woke up and started pulling them off. I had to leave the room while they did it, and when they came to get me they were frustrated and Scott was mad. I went into the room to pick him up and he kept pointing at the EEG lady. He wanted her out of that room! I got him calmed down a little, tried to turn on some Dora the Explorer to distract him, and feed him a little bit of pancakes and orange juice until Aaron got there.

When Aaron walked into the PICU I don’t think I was ever so relieved to see my husband-ever. I was so tired, and needed his support. He came equipped with a fully packed diaper back, Scott’s blanket, his animal he sleeps with, some toys, mandarin oranges to eat (Scott’s favorite), a bottle of milk, and a optimistic attitude that I needed to see. He couldn’t have come more prepared. He offered to stay with Scott so I could go home and shower, get something to eat, and rest if I needed to. I was hopeful that Aaron would be able to work his magic with Scott and they would be able to get the EEG done while I was gone. Sometimes a father’s touch is all it takes.


Amy Ritter said...

You have nailed every emotion and feeling and thought and made me flash back to our own experience. You and your family are an amazing example to us. You are stronger then you know. Your in our thoughts and prayers. We love you guys.

Karen said...

I second Amy's comment! Max had a series of febrile seizures when he was just 5months so I remember the feelings of hopelessness and faith. Thanks for sharing your story. Love ya!

The Crew said...

you are amazing monae, when you don't think you have the strength just remember that I know that you do!...sending all our love AND strength the you and the fam and that special little Scotty. My dad has told me so many stories but you always think that they will never happen to you! You will make it through this!

Nancy said...

Oh, Monae. I ache for you and at the same time know Heavenly Father will help all of you through this. I put Scott's name in the temple when I went last week, but next time I will put in everyone's name. We love you and are praying for you! I know the Lord is watching over you. I love your example for all of us --- especially how when bad things happen you send your kids to their room to pray. The last time I rode with one of my kids in an ambulance I was reminded that nothing but family (& of course the gospel) matters. NOTHING. Please tell the kids we are praying that they will feel The Comforter and Heavenly Father and the Savior watching over them.

Dre + Drew - Southern Living - Georgia said...

Love you Monae

Libby said...

I honestly can't imagine--though you had me in tears through this whole post. We are praying for you all!

The Byrd's said...

That is so scary my heart goes out to you. It's never fun to see your kids in a situation you can't control. Takoa Started having them when he was just 6 months old in the car while I was by my self. that was a scary time for us but we learned a lot in those months. we will keep your family in our paryer!