you never know where the next miracle is going to come from, the next smile, the next wish come true, but, if you believe its right around the corner, and you open your heart and mind to the possibility of it, to the certainty of it, you might just get the thing youre looking for These last 3 weeks have been the longest, toughest weeks of this journey. They have actually seemed longer than the entire (almost) 11 months. Im exhausted both emotional and physically and I feel like my body is here but Im not in it. I miss my husband, my best friend, and the thought of never having him back nauseates me. No hes not going anywhere but the person I once knew will never be coming back home the way he left it on Sept 6th. The first week and a half at Charlestown was great. Kevin was doing really well and I left one day skipping when a therapist told me he has this and hes going to do just fine. Music to my ears! Then came drama... Kevin was taken off his meds. The purpose of this was to flush out his system and see where he is baseline. Sound familiar? Yes we went through this a few months ago. Not good! I understand why this needed to be done but its painful to see Kevin at baseline and doing nothing. At baseline Kevin just lays there with his head to the side, eyes opened and drooling. There isnt any interaction from him and he does not track. When his eyes are opened its just a blank stare. It was obvious Kevin is dependent on the meds so they started him back on the sinemet and hes been back on that since last Wednesday. He is now at a dose of 50/200 TID. There are positives and negatives right now. He seems to have better tone and have some type of emotion back. This is the first time since around January that Ive seen tears in his eyes again. He tracks a little bit now but nothing like he did when he was on all his meds. I met with his doctors tonight because Kevin really needs another med to give him a boost. We are all on the same page and Im praying with the days ahead Kevin will get back to where he was about 2 weeks ago. Why not just put him on the meds he was on? Cant because Kevin was having a bad reaction to amantadine. Kevin was on amantadine since October. Since then he had red, hot flair ups on his skin over the knees and his legs, feet and hands would turn a purple/blue color. We always questioned whether this was lack of oxygen. Come to find out its a side effect to amantadine which could be more harmful to the patient and set them back even further. Its some type of neuro pain that once you get you cant cure. Thank god they discovered this before it was too late. Within the next few days theyre going to try Kevin on Ritalin and if all goes well he will stay on that. If nothing happens then it seems like after 8 months of pushing for it...I will finally get my wish of a trial of apomorphine. All these meds mean nothing to you but Im hoping it may help someone down the line. Its also my way of tracking what Kevin has been on. Kevin still has his therapy 3x/day for 1hr each. Although he is not doing as well as when he was awake and engaged they say his tone is better. Last week Kevin had an MRI and yesterday he had an EEG. Im waiting on the final report of the EEG but they said there was some activity of possible seizures but they will have someone specialized look at it. The MRI was the hardest to hear. It was put to me that the left side of Kevins brain is wiped out. The language is on the left side of the brain where the majority of Kevins injury is. The doctors are unsure how much Kevin will be able to understand to be able to learn. I asked if they were hopeless and they said no. So I asked is it just more of a challenge and they said thats a better way to put it. Even though this is news that was already known its just so hard to hear. I still shake my head in disagreement and say this kid right here is going to prove everyone wrong. He has to get better he has 3 boys that need him...I need him. With so little known about the brain and all the research out there I am going to make sure that Kevin explores every avenue so I can get him back as close as I can to his old self. I believe our miracle is right around the corner. I actually think its closer than around the corner and well see it sooner than later...right now its being held up by the doctors.
Posted on: Thu, 31 Jul 2014 01:34:43 +0000
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