Friday, April 15, 2011

The Way



So before I begin with my post, let me catch everyone up. Kannon is now a one year old! I can't believe at how fast time flew by. It is amazing how strong he is and all that he has and will continue to conquer in his life. It has been a journey that's for sure...I learn from him everyday, and in so many ways he reminds me of my mom. So strong, but yet so fragile at the same time. Sometimes it is hard not to question God's plan for us, and why things happen when they do...and I will be the first to admit that, yes, I am a Christian, but I'm not perfect. There are times when I get mad, ask why, and even question God's way of answering my prayers...Life's not always peachy although I might do a good job at making it look that way. But I do have my moments where I just break down. I often think about all the things I miss about my mom. Or for that matter all the things that she is missing here. Kannon's birthday was probably one of my most bittersweet moments. It was all I could do to not think about it during his party. But at night when everyone is sleeping it is easy to become so brittle. Wondering if she really got to see him dig into his cake too. And how we were all so excited about the digging in the cake part, that we ALMOST forgot to sing happy birthday to him (yeah, that actually happened)! But in the morning, it's a blessing. It's an amazing feeling to wake up to the most precious son and loving husband that a girl could ever ask for. That when in a world full of let downs; we were able to live another day. It is that feeling that keeps me going, that keeps me grounded, keeps me hoping, and that keeps me praying. It is my daily reminder that God is there and guiding me through these difficult days. So that being said. We are sitting in the hospital for the 4th time in a little over one week. The first visit (Saturday) we took him to the ER because he was running a 103 temp and throwing up out of absolutely no where at his Scentsy donation party. They did some tests and let us go. Two days later (Monday) we got the results and they said he had Adenovirus. They blew it off like it wasn't too big of a deal since most kids will fight it off. Well, that landed us back in the ER on the next day (Tuesday). Which they ended up admitting him because he was still getting sick, and wasn't eating, and he was dehydrated. Kannon was in the hospital until Thursday afternoon we were finally discharged (JUST IN TIME TO CELEBRATE THE BIG O-N-E)! Then, on Friday (Kannon's birthday), he began having seizures....he has always had seizures (they have never been "controlled") but this time he was doing something different. These were a lot longer than normal, and he was actually seizing with repetitive convulsions. We have never seen him do this before, which as you can imagine this would do to any mom, it scared me to death. I called his Neurologist's office and they said to call an ambulance. So as much as we didn't want to go back to the hospital...we called. When they arrived, and walked in the door, Kannon began having another seizure. Eventually it seemed as though the seizures started getting a lot closer together. He was seizing for almost the whole way to the hospital. Not much was done while we were there. They increased his medicine and sent us on our way...Saturday (although Kannon's new seizures still continued to occur) we celebrated his birthday party which was John Deere themed :) It was SOO much fun, and it was really great to get to see everyone! Sunday (still having seizures) we slept in FINALLY and that was the best feeling ever. The three of us snuggled all day long. So here we are on Monday and Kannon is still having seizures. At one point he had about seven in an hour period. So I called the neurologist's office again just to let them know that these new seizures are still happening and they don't seem to be decreasing at all. The secretary talks to the neurologist and then gives us a call back and next thing I know we are being told the they have a room ready for him and he needs to get to the 10th floor ASAP.


So, to pick up where I left off from part 1. When we got settled into the hospital, Kannon was started on new and stronger seizure medications by IV. At this point, if you can picture in your head, Kannon's little veins are for the most part picked over considering this is his (I lost count) but maybe 4th or 5th time back in the hospital. When it comes to Kannon's chubby arms and delicate body, it seems it always takes AT LEAST two times before they actually get in the vein and that doesn't even count if they blow the vein later when trying to start the IV. BUT this trip, we finally got someone who got the vein the first time...and guess where it was at? THE THUMB. A thumb vein, really? I know the hand is common, but a thumb vein AND on Kannon! Wow. This lady was seriously a pro when in came to starting IV's. But anyways, after that we got to talk to his neurologist and she basically told us that Kannon's body is just laughing at us with all the medications we have tried and zero have worked. So she gave us two options of meds to consider. One being Phenobarbital and the other Depakote. After trying so many medications and being very anxious to get our son's seizures controlled, there is only ONE thing that you have to ask. What's the downfall to both? That's how we choose now. Phenobarbital we were told is heavily sedating (even more than the other seizure meds) and is usually given to kids in the NICU because they sleep a lot anyway. However she did say that it works well with the ketogenic diet, which Kannon starts in May. The Depakote was the risky one. The Dr. said she typically doesn't give this medicine to children under that age of 2 due to the possibility of mitochondrial disease. Usually we don't know until the age of 2 if kids have mitochondrial disease, however they could go through a lot of tests that is really long and includes genetics and muscle biopsies, etc. to see if they do. But she said for Kannon we don't have that kind of time, and we need to move quick, and all that testing would delay the what we would do is have Kannon brought in every 2 weeks to have his liver checked and blood work done to make sure he wasn't having liver failure. Our instant reaction was, thanks but no thanks. So we chose to do the Phenobarbital, but since
1.) it was going to sedate him even further
2.) he was already losing weight because he was sick
3.) the medicine he was on before made him so tired that we struggled to get him to stay awake and eat enough AND
4. all the choking, all the time. we made the only logical decision to put in a g-tube. It was a decision we all struggled with for a LOOOONG time. But we did it. I am glad that we did, because he is able to get his nutrition and be a healthy baby and pack on the pounds now! Plus, he doesn't have to taste that gross medicine anymore. After a week of being in the hospital we were finally sent home. However, in some aspect it is back to square one for us. We started noticing Kannon's progress developmentally taking drastic steps backward. I called the Dr. today to let her know that he is still having seizures, but the main reason I called was to ask if having these episodes, especially the ones he had on his birthday, if they could be making him lose milestones. And what a heartbreaking answer I got...."it is typical for them to do that and it could take months for them to pick them back up again."After all of the seizures and the trauma it did to his little body we are now working with him several times throughout the day on learning to eat through his mouth again and the "suck, swallow, breath" that he learned while in the NICU. How to grasp onto our fingers, or to lift his arms and how to kick his legs....all things he knew how to do once before but are now having to be taught to him again. I want him to be able to eat real food one day, and be able to try what ice cream tastes like or even pizza. I want him to have a favorite food that his momma now more than ever we are realizing not to take the little things for granted. To work with Kannon everyday, multiple times, and teaching him muscle memory. The best thing about it is, I know God doesn't give us what we can't handle....and with that being said....God knows Kannon's a fighter. We'll be okay.