Thursday, January 27, 2011

Again and Again

Well, it has happened again. More seizures for Coy. This one seemed to be the least severe of them all. The same thing happened as has happened in all of the previous ones. I managed to get the camera out and shoot some video of this as it was happening. Actually, Caleb is the one that took the footage. I was helping Stacey to administer the Diastat and talking to 911. This video is hard for me to watch yet strangely I found myself watching it over and over and over again. I'm not sure why. Some might criticize why I would choose to show this video. I'm not sure of that answer either other than I want people to see just how disturbing these events can be. Unfortunately, there have been several for him and I think that I'm handling them better and better every time but it is still unnerving to see your little boy laying there and know that there is nothing you can do to help him.

video video

Wednesday, December 1, 2010

More Seizures :( :(

It has been a long time since I posted last and so today, on my lunch break, I'm going to post just for a few minutes. Coy had a 3T MRI that showed no structural malformations which does not make him a good canidate for surgery at this time. However, he had another seizure episode the first weekend of November. It had been four months since his previous seizure so we were thankful for that. This one did not seem to be as severe as some of the others but I feel like it was because we caught it just as it was starting and was able to give him his Diastat almost immediately. He still ended up in Kosair for the majority of the weekend but most of that was just waiting on the Neurologist to show up and talk to us. So far, we have resisted adding a second medication to his maintenance medicine. Primarily because of the concerns that we have of how the medicine that was recommended to us could potentially change his personality. It is a scary thing to think about giving him a medicine that could alter his personality but it is also scary living with the fear that we might not catch his next seizure soon enough to get him the medical attention that he needs. During his last episode, we requested that he be taken directly to Kosair's but the ambulance driver did not comply. Apparently, because of the ambulance that we received, their policy is to take them to the nearest hospital to stabilize the patient first and then move him on to a specialty hospital only after they are stabilized. Coy's oxygen rate had gotten fairly low so they didn't risk getting him to Kosair's immediately. We were not thrilled with the service or explanation that we received from Floyd that evening but needless to say we were releaved that everything turned out OK this time. He is now on what I would consider a very massive dosage of his medicine for a 50 pound child. As of now, he seems to have very little if any side effects to this medication. We hope that continues to be the case and that future seizures can be more easily managed. He is such a sweet, sweet boy and brings a smile to the faces of everyone that he meets. He doesn't know when his seizures are coming and he has no recollection of anything that happens during them. I am hoping to video tape one of these seizures for the purpose of showing the doctors what he does when he seizes. Somehow though, when it starts happening, the last thing that I think about is getting the video camera to tape him. During the last seizure, Caleb and Katie were asleep and the EMS and ambulance did not wake them up at all. It wasn't until morning that they learned that Coy had had another seizure.

Sunday, August 22, 2010

The First Day of School

Coy got on the bus a couple of weeks and was generally very excited about his first day of school. He had been dying to ride that bus ever since he got here and August 11, 2010 was his day to do it. He did it. With a huge smile on his face, just like he does just about everything else. I have to admit, that boy smiles more than any kid that I have ever seen. It is amazing. Some or another, his brother and sister have become able to make him not smile at times but for the most part, he smiles a lot. I did great too watching him get on that bus. I was as proud of him and as happy for him as I was for either one of the other two that had gone before him. But then I saw him in that gym. He looked so grown up and mature. His brief time here with us flashed through my mind and I became a wreck. I briefly imagined what his life might have been like had he not been adopted. I imagined his medical problems and other issues and I have to admit it was too much for me to handle. I felt my eyes get misty. There may have actually even been a drop that fell out of them. I ran over, hugged him really good, told him I was very proud of him and then I got out of there. He was fine. A big, big boy.

It has been over 7 weeks since his last seizure. I'm guessing somewhere around the 10-12 week mark. He did have some bloodwork done recently that showed that his trileptal levels were normal but I'm not sure what a normal level of trileptal is for a 5 year old boy. He is going to have a fire drill on Tuesday of this week. He definitely is exhibiting a degree of anxiety about that. Hopefully, Tuesday will come and go without much excitement.
Coy did get to meet the EMT worker that has been the first responder come to the house on 3 of the 4 seizure episodes. It was good for the man to see Coy and how he is when he is awake so that he can appreciate how "out of it" he is when he is seizing. The man is a very kind and gentle man. He has no idea how much he is appreciated.

Saturday, July 10, 2010

More






I have missed posting to the blog. Life has gotten so crazy lately that I haven't had the time to post. And, quite frankly, when I have had the time, I haven't had the energy or the inspiration to post anything positive.
Unfortunately, Coy has had a couple more seizure episodes since I last posted. The most recent one, over the 4th of July weekend was easily the most severe. It started the same as the others but quickly progressed to the point where he required being hooked up to a ventilator to help him breath and to protect his airways. His seizures eventually became convulsive after he had been seizing for over 4 hours. The only solutions anyone is providing is increased medication. There is no hope in medicines for me. I have several other significant stressors in my life now and I would discuss them here (I don't think anyone but strangers are still reading this) but I'm too tired. The toll that his seizures are taking are untold at this point.

Wednesday, March 3, 2010

Another One




Coy had another seizure last night. Very same pattern and timing as the earlier one. Increase in medication dosage is the only fallout so far. I'm sure that an increased fear at bedtime will follow as well. But in between the seizures, we have been having lots of fun. And after the seizures, the rest of us are exhausted and Coy does not remember anything about it at all.

Wednesday, January 20, 2010

Glad That's Over

As we were going through the adoption process, I started using this blog to update people on what was happening with us and the adoption. We also used it to stay in touch with people while we were in Ukraine. But, after we got back, everyday life kind of got in the way as did the realization that our life was not really interesting enough to warrant very frequent updates to the blog, so, in time, my postings have declined dramatically.

Unfortunately, we have recently experienced an event worthy of bloging. Not so much as to pass on the news, although it is useful for that too, but for me to express it. For some strange reason, I seem to find comfort in sitting here and putting my thoughts out there. I'm not sure that anyone else is reading or not (except my mom and her sister) but I'm posting it anyway. Not because I have to, but because I want to let go of it and this seems to help me. Here is what has happened, according to me.



It was a dark and stormy night. Actually, it was more foggy and dreary. To be honest, I can't remember exactly what the weather was. But I do know that it was cold and that we had been outside for several hours on Monday. Thanks to the MLK holiday, we had played different sports outside for a significant portion of the day. Stacey had been to a doctor's appointment of her own and I stayed home and played outside with the kids. But the afternoon was memorable only because they had all gotten along the entire afternoon. Not only had they gotten along, but the older two had swung on the tire swing with Coy and let him win at some game that they made up just to get him to giggle his infectious belly giggle. Once Stacey had returned from her appointment, we loaded up and went as a family to Caleb's basketball practice. Afterwards, we bought a single Pepsi from the vending machine for the kid's to share and came home the same way that we had many other nights before. We did our family devotion together on the couch as soon as we got home so that I could go downstairs and exercise on the elliptical. The kids stayed upstairs with Stacey to complete the bed down process. After my time downstairs was done, I came upstairs to Katie having a "disagreement" with the boys. It ended with Katie in her room and us talking about the need to find her happy heart and to do the right thing and seek her brothers' and her mother's forgiveness. I left Katie stewing in her room while I went to take my shower.

I had been to the funeral home earlier in the day to see an acquaintance who was burying her 27 year old son. And later when I was taking my shower, I remembered very vividly asking God to never let me bury one of my children. So that thought was fresh in my mind. With my shower complete, I went to the living room to find Coy already in bed and Katie and Stacey reading a book on the couch with Caleb in his bed reading a book. I went in and told Coy goodnight by saying "Good night Abigail" and him looking at me very quickly and responding with a "My name's not Abigail, I'm Coy". Very similar to many other nights. Still, nothing going on that was worth remembering for very long. As Katie finished with her reading, she decided to do the right thing and make amends with her brothers. She went to their room and climbed the ladder to Caleb's part of the bunk bed to apologize for her earlier actions. It excited him so much that he hopped down to tell Coy the good news of Katie's remorse. But what Caleb found was not what he expected. He came to me at our computer and said "Dad, come and see this, Coy has fallen asleep with his eyes open." To which I lovingly replied, "Go lay down Caleb, you need to get to sleep." He walked in to his room and almost immediately came back to me and repeated his request because he said that it was spooky. So I got up and followed him into his room to find Coy staring blankly and lying lifeless in his bed. Not being educated on seizures like I am now, I immediately assumed that Coy was in a very deep sleep. I sat him up in his bed, saying his name and rubbing his back with no response from him. It was like he didn't see me or hear me. Man, was this kid sleepy. So I tried to get him to walk a few steps thinking that would wake him up but he had trouble walking. I brought him out into the living room with the volume of my calls of his name ever increasing but still no response from Coy. Caleb and Katie obeyed my instructions to go and get Stacey when none of my attempts roused Coy. Stacey sat in our reclining chair with Coy in her lap and he almost immediately started swallowing and drooling. Our reaction, he is going to throw up. Stacey carried him to the bathroom and steadied him over the toilet but nothing came. Coy reached for his throat so we thought that perhaps he was needing to get air to his throat so she ran with him outside to get some cold air to his throat. By this time, I'm on the phone with the immediate care center to see what we need to be doing for him. They are asking questions about his breathing and his lip color but none of our answers are scaring us yet. However, the duration of the non-response is beginning to get troubling. The older kids are imploring us to call 911 even though it was not a serious situation to us yet. I'm not exactly sure what happened because I was in the kitchen talking on the phone to the immediate care center lady but Stacey became animated and called for me to get something to help prevent Coy from swallowing his tongue because his swallowing efforts had become more intense and his drooling had become profuse. Also, I could have swore that the immediate care center lady told me that she was calling 911 for me so I hung up the phone and thought that it would soon be over. In just a few short minutes, Coy's condition seemed to get worse quickly. And as the phone rang, it was the immediate care nurse again telling me that she had spoken with our pediatrician and he instructed us to call 911. Really?? OK!! I tried frantically to dial 911 but I couldn't get our phone to ring it through. By this time, Stacey is in full panic mode and the other kids are beside themselves in distress. I'm a mess too as I punch in the password to my blackberry because I can't get our home phone to dial 911. The 911 lady begins to give me instructions and I'm not sure if I should act on what she is telling me or pass them on to Stacey for her. But I decided to do what she says and have Stacey help me. I begin to rub Coy on his chest with my fist just as I am being instructed by her and the slobbering begins to get better. His fingers and mouth are still blue and seem to be getting bluer. Thankfully, there is a knock at the door. It is a single first responder that lives in the neighborhood behind us that immediately comes in and has us put Coy on his side and on the floor from his place on the couch. Coy immediately vomits, albeit very slightly. Not long after that, what seemed like seconds but was probably minutes, the ambulance and the sirens and the lights showed up. What happened next, I'm not sure but I heard a lot of medical jargon and the only thing I remember clearly was one of the men saying "He's absent, he's absent." They were asking questions about chemicals or fevers or head bumps and the answer to all of which was negative. They worked kind of like I imagine Santa working because in no time the room was full of medical equipment and medics. We pushed furniture out of the way to make room for the stretcher. I also remember yelling at Caleb and Katie to get to their rooms and they would scurry back only to be back in the hallway seemingly every time I looked up. As the paramedics strapped a still lifeless and non-responsive Coy into the stretcher, I will never forget Caleb's question to the EMT of "Will he be OK?" and the EMT's response of "We will take good care of him." Caleb and Katie both screamed a sigh of relief and hugged each other like their team had just won the NCAA Championship. And just as fast as the EMTs had showed up, they took Stacey and Coy and they went out of the door and the house was as silent as it has ever been. I looked in the faces of Caleb and Katie and cried like a baby. I was so completely terrified. They helped me to pull it together enough to get on our knees by the couch and we all prayed for Coy and the doctors and everyone that would be helping him in the next moments. I called both of our parents to let them know what was happening and then I called our neighbor to come and sit with the kids until one of our parents made it to our house. Just a side note here: everybody needs good neighbors. By this time it was 10:45 or so at night. I just assumed that they would have been awake and would have seen the lights or heard the sirens of the ambulance. When they answered the phone, I asked Mrs. Lang if they were in a position to come over to the house for a little while. A most unusual request I will readily admit. She didn't ask why or what is going on or anything, she just said that she was coming over. And in a minute, she was there. What a wonderful blessing they are.
With the older two settled, I took off for the hospital. The only problem was that I wasn't sure which hospital I was going to. I made two phone calls on my way to the hospital. I called one of the men in my Friday morning men's group and I called one of my best friends from our Sunday school class to request prayer. When I got to the hospital parking lot, I called my sister to talk to her but she had already spoken with my parents.
I ran inside to find Stacey and Coy and the doctors surrounding him. He was laying there with the oxygen on him but it didn't look like Coy to me. We rubbed him and spoke to him and kissed on him but with absolutely no response. The seemingly relentless and repeating questions from the medical staff did not offer any hints as to what might be happening. They took him back for a CT scan and kept looking in his eyes but he was not there. His vital signs were good which gave us some sort of comfort. We weren't there long before a number of people from our Sunday School class began to show up. By this time it was well past 11, probably closer to 11:30 at night when these folks showed up. All of them with jobs to be at the next morning and all with children of their own at home in their beds. Words will never be able to express what a relief it was for them to be there with us at this time. We were stuck there waiting and their mere presence and conversation were a pure comfort that only people that have a common bond like we do can enjoy. We prayed and laughed and talked and prayed again. The doctors at Floyd Memorial seemed either concerned or perplexed enough to suggest that we be sent on to Kosairs. A CT scan had normal results. They called an ambulance from Kosair to come and get us but when it showed up, it was just a standard unit and they needed a paramedic with them to be able to administer more medication if necessary. We waited until 12:45 to leave for Kosairs with still no response from Coy. They kept telling us that he would be exhausted from the seizure as well as the medicine. This was in addition to the time of day but yet they kept rubbing him and calling him too like they were expecting a response.
By 1 AM we were at the emergency room at Kosairs. Three of the men from our Sunday School class followed us to Kosair's and stayed until 2 AM when they moved us to the Transitional Care Section in the Intensive Care Unit. While we waited in the ER, Coy looked up for about 3 seconds and for those brief moments, he looked like he was 'home'. He laid back down and went back to sleep but after that, he looked different to us. He looked like a boy sleeping and not the lifeless lump of flesh that had left our house.
It wasn't until 7 the next morning that he woke up and said his first words and answered a question. They immediately gave him more medicine and he went back to sleep. Stacey and I slept precious little in the coldest room in the hospital. A technician came in and gave him a EEG while he slept and then we waited even more. Around 11 or so, the first visitors of the day began to show up. And as they were leaving, Coy began to wake up. At around 12, he was awake enough that he seemed to be his old self. He was a little disoriented and wondered why he was in the hospital but for the most part he was back in the saddle.
The next couple of days consisted of more and more questions from the doctors as well as an MRI. The bottom line is this......I'm not sure if they diagnosed him as an epileptic or not but they diagnosed what had happened as a complex partial seizure and the it was epileptic in nature. The neurologist recommended that he be medicated because of the duration of the seizure and that we carry around medicine in the event of future seizures that might last longer than 3 minutes. The neurologist also said that based on the length of the seizure that Coy was at a greater than 50 percent chance of future seizures but that the daily medication would reduce that chance by 50 percent.
A few of the more memorable comments include that Coy started crying on Tuesday when he realized that he had missed breakfast. He couldn't eat because he needed to be sedated for the MRI. So I immediately began to talk up the intravenous fluids. "Coy, how about some intravenous fluids for lunch?" Later that night, when the doctors came in to look at him, they would ask simple questions that they expected him to know the answers for. One of the questions that they asked him was what did you have for lunch to which his response was, "Whatever was in that bag." Also, the nurse on Wednesday morning was very nice to Coy. I wasn't sure that we were going to be able to get him to leave.
It all kind of seems like a bad dream now. Nothing has changed but yet everything has changed. So many people have come to us and told us that they were praying for us which was such a source of comfort for us. It is so good to know that the body of Christ has such quick feet and good hands. We hope that we never need them again for us but that is a naive thought. We all need them sometime. I hope that I am as quick with my feet and as ready to hug and pray as the people around us were. It was such a welcomed blessing.
Several people have asked us how they can best pray for Coy now. The best that we can come up with is that this won't happen again. But if it does, that whomever is taking care of him will be able to handle his situation with confidence and courage.
And lastly, after any experience in the hospital, I have always walked away feeling like the luckiest person on earth. There are so many sad stories there and so many people that face death or a life-long struggle with courageous hearts and strong spirits that it inspires me. It also makes me thankful for our situation and for the way that it turned out. Coy always wants to pray for an ambulance. He is quick to say a prayer on just the sound alone. The next time I hear or see one, I will be praying. Not only for the family that is affected by that ambulance, but a prayer of thanksgiving for our family and how a little boy's ambulance ride has given me a renewed passion for what the real purpose of life should be. But for the ambulance ride, I'm glad that's over.

Sunday, December 20, 2009

Where Have I Been???
















Not sure. Mostly on Facebook I guess. Nobody has really asked me about the blog in a while so I wasn't really feeling the need to post. Still not really feeling the need to post actually. Definitely not feeling the time to post here. Plus, blogs are so 2007 anyway. Facebook and Twitter seem to be much more popular.