Today is two weeks since the day that Katy Grace suffered her seizure and our lives changed drastically for about 48 hours and in some ways forever. I have wanted to write this post ever since that day. I want it as a testimony of the grace that God poured out on us. It is a little difficult to figure out exactly what to say, however. How do I sum it up in a concise posting and have it accurately convey all that happened? There is so much: the details, the miracles, the prayers and the love that has not just showered on us but poured. It is very, very humbling.
Her seizure happened on Tuesday, but the Sunday afternoon before she woke up from her nap with a fever and started being more clingy and irritable, not really acting sick, just not herself. It was the same through Monday. We didn't do a whole lot that day but snuggle. She was very uncharacteristically fussy at bedtime and had to be held to go to sleep. Usually she just lays down on her pillow with her blanky and that's it. The next morning, Tuesday, she seemed better, but we were debating whether we should take her to the doctor since the fever and irritability were keeping on. Her fever had stayed relatively low the whole time, though so we opted just to keep her hydrated and keep an eye on her.
She took a very long morning nap that day, close to four hours so I was a little uneasy. When she woke up, her fever was the highest it had been and she was obviously very unhappy, but I fed all of us lunch. Tim and I talked on the phone and I was walking around the house with her nestled up against my shoulder. I set her down at one point to do something and she was just standing there in the middle of the floor while Oliver happily and noisily ran back and forth. She wasn't very responsive until it seemed like she had gotten scared by something. She made a very unusual noise so I immediately picked her up to comfort her. Thank you Jesus I was there to pick her up just then, because that is when the seizure started.
I cannot even describe the horrible feeling of feeling her in my arms, go stiff and lifeless and unresponsive. I started calling her name, rubbing her, begging her to come back. She had started turning purple so I ran to call Tim, still not sure what was happening. Somehow, by the grace of God by the time I got my phone I knew what I was seeing and immediately called 911. Shallow to no breath and her lips and hands turning blue, her eyes rolled to the side. It was the part of so many stories I had heard and ached over. The helpless, gut-wrenching feeling that I was the one who was her only hope to save her life. Every second counted, every decision was critical. I know now that God was right there. I felt His presence so intensely. I knew, somehow I would be given the answers and would know how to save her life.
I am so thankful for the dispatcher that I reached on the phone. She calmly walked me through what I should do until the paramedics arrived. She kept me from panicking. This whole time, Oliver was right there. He was angelic. He wasn't scared or in the way. He just watched calmly from a distance. God gave him His grace as well. I laid her on the floor, my hand supporting her head to help her breathe. My ear was as close to her mouth as possible to hear her breaths that were coming irregularly and shallow.
Never before had the sound of sirens been so welcome or the sight of 7 or 8 emergency response people crowding into our dining room. They told me it was a febrile seizure as soon as they arrived, which was only 5-10 minutes after it had started. We live just above the fire station so the wait was not long. Another praise! I had never heard of a febrile seizure until then, but now I know that it is a fairly common thing for little children. If it lasts for 5 minutes or less it is normal and not dangerous. By the time they arrived, however, it had been at least 10 minutes and Katy Grace was still seizing. She was dehydrated and had to be put on an IV immediately.
After any seizure a state of sleepiness, called post dictol sets in, so they were monitoring her to see if that was what was happening to her or if there was something more significant going on. About then they started talking about transferring her to the hospital. I think I really started to lose my sense of calm about then. I think that in the back of my mind I didn't expect that. I thought the EMTs would come and help her, she would stabilize and all would be well. They started talking about needing to give her a seizure medicine to get it to stop, but for some reason were very reluctant to do so. It is all a little fuzzy in my memory. All I could think about was wanting to see her eyes recognize me and respond to my voice.
At this point I called Tim. He still knew nothing about any of this. Only 15 minutes before we had talked and everything seemed like a normal sickness. I cannot even imagine receiving a phone call like that and being 20 minutes away, helpless to do anything, but of course he came as fast as possible. Another detail was that a few days before our second vehicle had gone into repair and was undriveable. I had no car and no car seats. Tim felt terrible for having left us "stranded", but all I could see was God's provision. Had I had the car, I may have been tempted to drive her to the hospital initially and now in retrospect I realize how dangerous that may have been. Because I didn't have a car seat for Oliver, however, he could not ride in the ambulance with us. There is no feeling like the decision of having to leave one child behind with strangers to go with the other. Thankfully I knew that Tim was less than 10 minutes away by then. Oliver seemed to completely understand. He was so brave and didn't question what I was telling him. He was very thrilled by the police badge sticker and fireman hat they had given him, as well as the vehicles outside.
It was a beautiful snowy day. I remember the crisp, clear blue skies and the cold but brilliant sunshine as we made our way out to the ambulance. This was my first time to ride in one, certainly to be in one in an emergency situation. Thankfully we live only 5 minutes from the hospital. Katy's seizure still had not stopped during the drive so she was given a dose of Ativan to try and stop it. It was unsuccessful. When we arrived at the hospital she was rushed into the room where there were at least a 6-7 person medical team waiting for her. I stayed with her, holding her hand, telling her I loved her over and over. At one point they asked me to sit off to the side so they could have all the room needed to work on her. I was very impressed by the competence of the medical staff, so was not put off by that, of course, but it was so hard to feel so helpless. To know that no one there loved her like I do, yet I was the most powerless to help. Seeing her little body still blue/purple, stripped down, with IVs and tubes all over her, the seizure still shaking her little limbs. It is something I never wish on any mother.
Before too long, Tim arrived with Oliver. There was immediate comfort just being all together again. It was pretty much a whirlwind in there. We started making phone calls to friends to come take Oliver while we tried to reach my parents. The support we had around us was immediately overwhelming, and I mean overwhelming in a good way. In the course of the next hour we had a friend there to take Oliver and another lined up as back up, one of our pastors came to pray with us and everyone we spoke to over the phone was praying for us. Talking about it later, Tim and I both felt that we were being lifted literally above the circumstances and held by God's comfort and wisdom. There is no earthly way we could have otherwise dealt with this situation as calmly and as clear headed as we were able to do. I can honestly say it was one of the most peaceful times I have experienced in life. None but God could do that!
Because the seizure would not stop, the doctor made the decision to give her a very strong second medicine, Phenobarbital, which stopped it finally, praise the Lord! It had lasted about 50 minutes total. About that time we were told she needed to be life flighted to Spokane to the Children's hospital there, because of the length of her seizure and the need to monitor her closely in the event of another seizure. Had she needed to be put on a ventilator, our hospital was not equipped to deal with a pediatric case. So the decision was made. Tim and I decided to drive together, as I was not allowed to fly this far along in my pregnancy. Oliver had gone back home by then and we were waiting for my mom to arrive to take care of him until we were able to return from Spokane, not knowing how long that would be.
Thankfully Katy Grace was stable by the time the life flight arrived. Her cat scan had come back negative, so as long as the seizures didn't start up again she was as normal as could be under the circumstances. We signed the necessary paperwork and kissed our little daughter good-bye and hurried home to pack a few things, get gas and make the 2 hour drive to be with her again. I could not allow my mind to dwell on the fact that I was leaving our daughter and driving away without her. That helpless feeling that wrenches a mom's heart At the same time, though, there was deep, deep peace in both of our hearts.
This was the first part of the journey. To be continued........
