I wrote some of this in Seth's blog "Gloriously Woven" so if you have already read some of it sorry.
Seth had his reflux surgery Feb 11th and that following Sunday he started to act like he was getting startled easily. It went on for about a week and then Monday (Feb 22nd) Lisa was feeding him and he did it at least 7-9 times in a minute period and I told her that "that" is what was concerning me and she actually said that she would call the neurologist so when I got home that is what I did. I got home and called and left a message and they called right back and said that they were going to have his actual doctor call me and talk to me. So he called me back around 4:30pm and told me he was having seizures called "infantile spasms". He said they are one of the hardest types of seizures in kids to treat who have a reason to have them and for Seth he does have a reason. If Sydney just came in to the doctor with them the mild medicine would work very well for her but that is because she has no brain issues to begin with. Seth was born with cCMV so that is his reason and therefore might be harder to treat. They increased his meds and started him on something new as well. Dr. Bernes said that if the new meds do not help then we will have to get him started on steroids. He also want an EEG again on Seth and see if there is anything that we are missing or to see if the brain scan is more abnormal than it was or if anything is calming down at all.
For some reason when I talked with his neurologist and they gave Seth some new meds I was not thinking and I stopped giving him his Keppra which is what he was on before these spasms started. I did not realize that was suppose to give that to him as well as the new meds. I guess when you have a kid with seizures the meds can be tricky and it can be hard to find the right combination but once you do it will work. So anyways, on Sunday the 28th I woke up and fed Seth his bottle at 6:10am and he was almost done with it when he had a full blown seizure that scared the CRAP out of me. It was about 4 minutes 6 seconds long and I went into the bedroom and woke Michael up and said that I was heading to the ER because I did not want it to happen again and I just was not comfortable with the whole situation and how Seth was during and after the seizure. To make a looooooong story short...I was at the hospital all day, they tried to get an IV in Seth 3 times until finally the 4th time worked, he got 15 ml of Keppra (his normal dose is 1.5ml) and we were sent home by 2:45pm. It ended up being my fault because I stopped giving him his keppra and you are not suppose to do that. I guess you have to wean kids of their meds and this is one that you can not just STOP. It will make them have a seizure if you do that, and that is exactly what I did.
I hate them and I have been having a really hard time with them. I hate knowing that this is something that he is going to struggle with, maybe his whole life and it makes me really sad. I want to be able to fix it for him and I CAN'T and as a mom...Seth's mom that is all that I want to do for my little boy. He does not deserve any of this it. I pray everyday that he could be healed from what this horrible virus did to him. It eats at me all the time that a cold virus can do such HORRIBLE thing and it makes me sick that such a cold virus did such HORRIBLE things to my little boy.
I have been having a hard time lately and I am not sure if it is because of many diagnosis at once, different tests that need to be ran on him, a lot of doctor appointments, the seizures and dealing with new things, or the fact that he is just getting older and I am noticing a lot more things. Actually, it is probably the combination of them all if I really think about it. Don't get me wrong here...I am not trying to get people to feel sorry for me in any way, shape, or form. I will keep doing what I can do for my little man and I will do it the best way I know how but it is hard! I have already been to over 24 doctor appointment since 2010 and it is hard to imagine how many more I am going to have to take him to this year alone. He already had Occupational Therapy and Developmental Specialist come out once a week and we are adding Physical Therapy (Praise the LORD) and a Feeding Specialist which will both want to see him once a week as well. That alone just gives me anxiety thinking about it. I just want to do the best thing for Seth and give him the best chance he can have. He is a miracle and he is here for a reason and I want to help him the best way that I know how. I feel like I fail him everyday. I sometimes feel like I failed him by getting a cold but I know that He has bigger and better plans and that He planned this out perfectly. It is just getting my heart and mind to both agree to that. So to say that this is hard for me is an understatement but I really am not sure what a good word is :)
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