So its not gonna to be easy. Its gonna be really hard. Were gonna have to work at this every day, but I want to do that because I want you. I want all of you, Forever. You and Me, every day! These past few days have been depressing. Kevin went from moving his arms and legs to not doing much of anything. He opens his eyes more but he just seems so out of it and hes barely moving. I was giving it another day or two before I brought up the meds again to the Nurse. I know the main focus was the infection and since that seems to be under control I figured today was the day to talk about things. It happened to be the perfect day because they do the weekly rounds where all doctors, nurses and therapists are involved. Im probably going to be jumping all over the place so try your best to stay with me. We all know from past posts that I am not a medication person. If its an absolute necessity and the odds without meds are worse then by all means he needs that medication but to be on meds just because is not going to fly. Not to mention I know Kevin and he does not tolerate meds well at all. Something I take for a simple headache hed take and be knocked out for the night. My meds in question are: clonidine, propranolol and keppra. I was told that my name was mentioned in the meeting and it was agreed that theyre going to listen to me because I may know what Im talking about (imagine). So as of today they cut his clonidine in half and the keppra will be cut in half tomorrow as long as the Neurologist clears it. The propranolol will be left where it is at this time. The clonidine and keppra can act like a sedation and could explain why Kevin is still so sleepy. The clonidine was at 0.1mg 2x daily and the Keppra was at 500mg 2x daily and will now be half that. Hopefully soon the clonidine will be completely off and if a high blood pressure medication is needed they can give him one that isnt so sedative. Kevin also seems to be restless at night and into the early morning. So he definitely may have his days/nights mixed up. They were talking about possibly adding another med to help him differentiate the two. Well here we go again and Im not a medication person. I suggested instead of giving him the amantadine at 6am and 1pm then may be they can give it to him at 6pm and 1am. Id like to take that step before adding another med. Just to recap the amantadine is a medication that wakes him up. They also increased the dosage of that today so Im hoping to see more from him tomorrow. I wish I had more to tell you about Kevin and his progress but there is nothing to say. There hasnt been any more wow moments at this time. I had to leave a bit earlier than usual today because the boys had a doctors appointment. I felt guilty that I left Kevin so the boys and I decided to go back there for a quick visit. When we got there Kevin was at the nurses station in his chair. This was the first time the boys saw Kevin in the chair. Declan liked it and kept hugging his leg saying Daddy I like you. Stephen wasnt too excited. He wanted to know why Daddy was in a wheelchair and would he be coming home in one. Its hard talking to the boys with many people around because theyre all ears. I get nervous wondering if they approve of what Im telling the boys. There was a very nice lady there who took the boys into the physical therapy gym (which was right in front of me) and the boys were playing basketball. I bet everyone who is in a coma on that floor wakes up tonight from my boys and their loud mouths. There was a chair that spins and Declan jumped on it and told Stephen to spin him. Stephen said Declan how does it feel to ride in a wheelchair. They are so clueless and adorable :) Then they got a bit out of control pushing each other around and around the table in the chair. After they ran into a lady I figured it was time to call it quits and go home. To everyone who has reached out to me and told your story...thank you. Please no one hold back. Let me know your story and give any advice you may have. You never know what may come out of it and your story could be the answers Im looking for. I appreciate all of you and taking the time to tell me your heartbreaking stories. You can help me/Kevin and someday I hope to help someone else with Kevins story. xo
Posted on: Thu, 14 Nov 2013 02:49:50 +0000
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