I wanted once again (just like i did on December 7th) to use this blog to update everyone on the latest on Ruthie’s situation. It has been a long couple of days for me and even longer for Ruthie, Michelle, and Michelle’s mom I am sure. Where, to start…i guess the beginning makes the most sense. After a GREAT Christmas day we spent Saturday as many parents do cleaning out closets, figuring out where to put new stuff, and organizing it all. Ruthie, was all into helping us clean etc. and riding her brand new princess “bike” (tricycle) throughout the house (complete with her Dora helmet…and mind you with only a diaper and a t-shirt to match the helmet)as we worked. It was a great day. As it neared 6 o’clock, we decided to load up the van and make a trip to a Goodwill drop off center to unload some of the old stuff that needed to go to make room for the new. As we got to the end of our street, I heard Michelle call back to Ruthie who was in her car seat. She called twice with no answer at which point I looked into the rearview mirror and saw her head cocked back and she was making a noise as if she was gasping for air. Michelle then said the words that we thought and hoped we wouldn’t have to utter again…”She’s having another siezure”. After all the positive news we had been receiving over the last week or so about Ruthie’s MRI, etc, I guess we had assumed we were somewhat in the clear. We were mistaken.
We got her unbuckled and sped around the corner to Michelle’s mom’s house and got her inside and laid her on her side until the seizure ended. It was a short one around a minute or so to our best estimation. We called our pediatrician who then consulted with the neurologist in Greenville and we were told to start Ruthie on Trileptal to help prevent the seizures from happening. We were also told that if she had a second episode to call her back and then head to Greenville to the Pediatric ER once she came out of the seizure. Again, we assumed and believed that we would be okay. I mean it was almost 3 weeks between the last two. We did go to Target (plug for my wife’s favorite store) and bought a baby monitor. (it was weird to buy a baby monitor for a 3 yr. old, but we did). We set it up just in case. Of course what that meant was a really sleepless night for Michelle listening to every snore, snort, and breath to make sure they were just that and nothing more. Right at 6 AM Michelle called me through the monitor and alerted me that Ruthie was having yet another seizure…a mere 12 hours after the previous one. She told me to grab the phone and go ahead and call the pediatrician. In my half sleeping stupor I did manage to get to the phone and call, however I did fall as I ran into the kitchen to grab the phone. By the time we received the return call from the on-call nurse, Ruthie had come out of the seizure and was alert. This seizure was another fairly short one, but for the first time there was SOME convulsing of the arms, head, etc.
We arrived at GHS about 7:15 or 7:30 and got checked into the Pediatric ER. The people there (and EVERYWHERE we have been here at GHS) were INCREDIBLE. The charge nurse was named Dawn. She was an incredible woman who has been “doing this for 20 years”. We were so blessed to have her tending to us in the ER. We had been here for about an hour and Ruthie was asleep in her Gammi’s arms when it happened AGAIN around 8:30…another seizure. We called Dawn and she came in, saw Ruthie, scooped her out of Gammi’s arms and headed to another room. She was so calm and collected as she did her thing. She calmly said to Michelle, “Mom, follow me. We are headed down the hall to another room to check her out.” She truly was amazing and such a calming affect for all of us. This seizure lasted a little longer and for the first time consisted of noticieable convulsing of the body and drawing in of the limbs. Ruthie was given a half of a dose of Dylantin (got no idea if that is how you spell it, but that is how it sounds) to stop the seizures. It was decided at that point that they would admit us to the hospital to be sure that the seizures would indeed stop. Niether of them in and of themselves were a major issue, but the fact that she had 3 seizures so close together raised some concerns.
Soooo, up to the 5th floor and the Children’s Hospital we go. We were placed in room 5515 and once there, we went through the whole ordeal with the two resident doctors, giving them ALLL the details. They were extremely nice and very attentive to what we were saying, which in turn, made us feel comfortable. Once they did all the prelims the BIG DAWG doc (that’s a redneck term for the chief resident.. if that if even the accurate term, but you know what i am talking about i hope) came in with each of them and as we were talking with him and asking and answering questions, Ruthie had yet another seizure… the longest and most violent (for lack of a better word) of them all. The BDD (Big Dawg Doc) was calm and told us to get her on the bed, which we did, and he calmly said “okay, lets time this to see how long it is”. Now I’m not a very smart person, and surely no where near as smart as a doctor, and obviously don’t know what to do. But as a dad I wanted it to be FIXED. In my mind, I was SCREAMING “don’t just stand there, DO SOMETHING”. And he did, he timed the seizure and let us know that it was a minute and 45 seconds. In hind sight, it was a blessing that they were all three there to witness it, because then they didn’t hve to take our word for what it was like, they could see for themselves.
After that seizure they gave Ruthie the other half of the dose of Dylantin to again try and stop the multiple seizures now that we were at 4 in a16 hour period and 3 in 6 hours and moved us to a room closer to the nurse’s station. At this point of the story, it gets a little crazy and i get really confused on the EXACT order of the meds that Ruthie was given. I know that sounds a little irresponsible as a parent, but I was EXHAUSTED, emotionally and physically, and she was given 3 different drugs each of which has at least two different names. Different doctors were calling the same drugs different names, and as I look back on it I am not sure exactly when which was given. OH WELL! I do know that at some point yesterday afternoon she had a dose of Ativan and her regular dose of Trileptal. It seemed okay at first as she was having fun, sitting up, playing, etc. but it took a sudden turn as she became VERY, VERY agitated. Agitated is probably an understatement…okay it IS an understatement. My sweet Ruthie became someone that none of us liked, now will soon forget. She was flailing her body all around, punching, kicking, clawing, and biting anyone who would hold her and there was nothing anyone could do to really console her. The only thing that even worked marginally was to put her in the large wheelchair/bed and walk her around the halls of the pediatric wing. And even doing that it was not exactly PLEASANT. That went on from about 5:30 until 9:00 PM. At 9, Dr. Mercer (amazing young doc) had the idea to “taco wrap” her….like you would a newborn. As we were trying (and failing) to do that Ruthie finally had had enough and went to sleep. At that point I headed home with the pa-in-law to be with Lindy and Cami while Michelle and her mom stayed with Ruthie.
I sooo had hoped it would be a good night, but found out this morning that it wasn’t. Ruthie slept from 9-midnight, then was awake in another of her rage fits from midnight till 4 and then slept again from 4-7. However, even in the sleeping times, it was not a good deep sleep. She seemed agitated even in her sleep, which of course meant less sleep for Michelle and Deb. This morning saw another dose of Trileptal but no Ativan. Our thinking was that the Ativan was what was causing the rage fits. However, things did not improve in terms of the rage fits. It got so bad that at one point we were given the option to let it “play out” or to give ruthie an anti-psychotic drug. We opted to just let it play out. So at about 2:45 today we met with the neurologist to talk things over… first about the meds and what was causing the temperament issues and then more generally about the seizures and the plan moving forward.
The neurologist was not completely sure if it was JUST the Ativan or JUST the Trileptal or the combination of the two that was causing the mood changes in Ruthie. Her best guess based on what had happened was that it was the Trileptal. The good news was that there were other drugs that could do the same thing that Trileptal could and would hopefully work well for Ruthie. We decided, with her suggestion, to go off of the Trileptal and try Kepra to see how Ruthie reacted to it in hopes that it would be beneficial and could be the long term maintenance type drug to hopefully prevent seizures. tonight around 6 she was given her first dose of Kepra through the IV. The best news I can give you at this point is that it is 10:30 and she has been SOUND asleep for the better part of 3 hours. Our prayer going forward is that this is the right med to help prevent seizures.
As for moving forward, we have for the most part good news. Assuming the switch to Kepra goes well in terms of the moods for Ruthie, and assuming we have no more seizures, we will be heading home sometime tomorrow. As for what is causing the seizures, we have a vague answer. We do know that the MRI of Ruthie’s brain showed NO signs of tumors, legions, scars, etc which means there is nothing inside her head that is causing the seizures. The neurologist told us that therefore there is a diagnosis of exclusion that Ruthie has genetic epilepsy. In a nutshell, there is something in her genetic makeup that makes her prone to have seizures. We have no concrete evidence of anything that might have made this happen suddenly to a seemingly healthy 3 year old little girl. The neurologist said since the seizures are not being caused by anything in her brain, that the cause becomes secondary to simply treating the seizures and hopefully preventing them from happening as much as possible. The tough part to me is that we head home tomorrow with the lowest dose of Kepra that we can take. We give it to Ruthie hoping that it is enough to prevent the seizures from happening, but not knowing if it is right. The only way we know is if she has another seizure, the dosage will be increased until we don’t have seizures. The good news is that it is possible that Ruthie could outgrow this proneness to seizures and eventually not have seizures and be able to come off meds completely. That is our prayer at this point.
Now to the GOD moment in the midst of this. I know that this has been the LONGEST blog ever, but I have to let you in on how God gave me one of the greatest wake up calls ever. I said earlier that I struggled yesterday. I didn’t, and I guess still don’t handle it well when Ruthie has a seizure. I pray that should one happen when I am the only adult around that I step up and deal with it, but to this point I have not been alone with her when they have happened and other folks (like Michelle, her mom and other docs and nurses) have handled it. I just was NOT handling it well at all yesterday. This morning as I woke up, I looked over to my nightstand and saw a copy of Max Lucado’s new book Fearless laying there. It was given to me by Michelle’s grandmother for Christmas and as we cleaned up Saturday it ended up on my nightstand. I have read a couple of Lucado’s books and this morning when I saw it, something (i now know was God) reminded me that often in his books Lucado will have great quotes and/or scriptures at the beginning of the chapters. I thought maybe there would be something in that book at the beginning of one of the chapters that could be an encouragement or a focal point, or a reminder to help me through the day. I kid you NOT, that I opened the book for the FIRST time and opened it to Chapter 4 and turned back a few pages to the title page of the chapter. The title? “The Fear of Caring for My Kids”. There IS NO WAY I COULD MAKE THIS UP. I thought, wow that seems appropriate. As I looked over to the opposite page, I read words that brought tears to my eyes. I have never felt God’s presence as I have read words from a book before. But today, I did. Those few words have become my prayer today and may be my prayer for the days to come. It was one verse of scripture that comes from the story of Jairus’s daughter in the 8th chapter of Luke. Jairus’s daughter was very sick, and he came to Jesus in a panic and pleads with him to come and to help his daughter. Jesus’s words to Jairus and to me this morning were POWERFUL…. a power that gives me chills right this moment as I tyype them.
” DO NOT BE AFRAID. JUST BELIEVE. AND YOUR DAUGHTER WILL BE MADE WELL.”
- LUKE 8:50 (NCV)
After I cleared my eyes of the tears, I went on to read the chapter. It is the only chapter of the book I have read to this point. I look forward to reading it all. But right then, right now, it was ALL i needed to see/read. The general gist of the chapter is a reminder to parents that our children are not ours but God’s. He has given us the birth of parenthood. He had given me the most incredible gift of 3 girls that I cherish with every ounce of who I am. And this morning I offered Ruthie and Cami and Lindy back to God. They are his children, just as I am His child. And though I don’t know what the future holds for any of them, I know that I WILL NOT BE AFRAID BECAUSE I BELIEVE. I believe in HIM and because of that, I rest tonight knowing that my daughter (s) will be made well. AMEN.