Well, we’re wrapping up what turned out to be a pretty good week. Things are still moving extremely slow here in rehab. The medical team is still insisting on treating Scott with extreme caution. As I stated in the previous post, while it’s not pleasant at the present moment it is the best option for the long run.
Scotts lungs are still looking okay and his secretions have been under control. His lung capacity varies daily but his all time best is still the 500 he blew the other day. He is blowing between 300-400 on average but ultimately our goal is to get him to 1,500. It’ll take some time but he’ll get there. Also, the doctor has spoke to us about the option of placing a diaphragm pacing system in Scott. As I explained in a previous post, this is an implanted pacer that helps with breathing. After careful consideration, we’ve decided that should Scott meet the necessaryrequirements we would agree to move forward withthe implanted pacing to help with his breathing. We met a gentleman here who had the surgery done six years ago. He was one of the very first individuals to receive the pacing system. He told Scott than in the six years he has had the system he has been completely off the vent and in his opinion he feels that the choice to get the pacer is a no-brainer. He said that he has had no complications with the implant and feels that the independence he has because he is off the vent is priceless. I feel that Scotts quality of life would improve significantly if he could be free of from the vent.
On a not-so-positive note, Scottsliver enzymes have been quite elevated so the doctors have been forced to pull all pain medications from Scott. He has had to suffer two days now with absolutely no relief from the intense pain he feels in his head and neck. The worst part is that they can’t seem to nail the cause of the increase in ALTs. They said it may be attributed to medications or perhaps a virus that he contracted from the blood transfusion he received while in Bronson. They said that they feel that it is likely something that will just have to run its course but unfortunately until they figure out what is causing the increase Scott will have to suffer without pain meds.
Now, on a better note, Scotts anxiety has gone down a little bit. He still gets himself wound up at times but I feel that they are a bit less frequent. I think that I’m seeing this reduction in anxiety because everyone prayed so hard for Scott to feel peace and since then the medical team has added a music therapist/relaxation therapist to Scotts daily schedule. She is the first person Scott sees in the morning and she starts his day with calming music and she helps him with visualaztion. Also, Scott recently has begun to sleep during the night. I think his rested mind is much calmer and less stressed. Since he is a little more peaceful he has allowed himself to start to trust the staff here a little bit more and time is proving to him that they aren’t going to allow anything bad to happen to him.
So while Scott is improving on his anxiety he is becoming more emotional. He gets overcome with love, grief, loss, anger, sadness, frustration, and joy. He breaks down everyday telling the nurses that he “just wants to hold his wife again.” He says that he lives for my arrival in the morning, it’s the best part of his day. Scott makes sure everyone knows that he is crazy about me and his only goal is to be able to touch me again. Scottsdoctor came in yesterday to talk to Scott and check in on how he is feeling. Scott broke down explaining that he just wanted to be able to move his hands again so he can hold me. His doctor pulled out a little machine, about the size of my cell phone, with two wires attached to two electrodes. He put the electrodes onto Scottsforearm and without telling us what he was doing, he twisted a little knob on the machine and Scott hand lifted up. My mouthdropped. Scott and I bothstarted crying. It was the first time since July 3rd that I have seen my husbands hand move without someone moving it for him. I was flooded withemotions. Scott just kept saying, “But I can’t feel it! I can’t feel it!” It really upset him that he could see his hand, without anyone touching it, moving but he had no sensation of the movement. We both just cried. It was just shocking to see that movement. It was sad to know that Scott couldn’t feel it. It was so many other emotions that I don’t even know how to put into words.
Scott isn’t the only one who has been emotional these days. I have been feeling pretty rough these days. I haven’t posted a whole lot because I felt like I didn’t have anything to say other than I am just angry. I was struggling to put my brave face forward because I am, at times, consumed with bitterness. I hate that this happened to Scott and on top of the fact that he is paralyzed it seems that nothing else can go smoothly, like not being able to have pain meds. I mean, he has struggled enough already! It’s so hard to watch the man that I absolutely love try to cry out in pain and he doesn’t have a voice to do it so he just sobs. I tend to be a very empatheticperson by nature so I used to struggle with watching really sad scenes in movies but I learned that I had to just keep telling myself “this is not real.” I will tell you that this is more heartbreaking than any movie and it’s our life, it’s real.
Two nights ago, when I got home from the hospital, I had to get the bags that we had packed for the 4th weekend out of Scotts car. I have been avoiding this task for quite some time so I decided that it was time I faced it because Scott needed an extra pair of shorts that I knew were in his bag in his car. So I walked into the garage and opened the trunk. I remembered, like it was yesterday, packing that trunk with excitement and anticipationfor the weekend ahead of us. I pulled the bags out and made my way back into the apartment. I sorted through the bags with a heavy heart and I was doing fine until I came upon the shorts Scott had worn the day of the accident prior to changing into his swim trunks. The belt was still on and his boxers were still inside and I lost it. I sobbed as memories of that tragic day resurfaced. I remembered the fun we had driving up to the cottage. We had hooked my ipod up to his car so we we had the windows down and we were singing on the top of our lungs laughing at our own terrible voices. It was a perfect day until, in one moment, our life shattered with Scotts vertebrae. I know it may sound like I’ve lost it but I laid those shorts and the tee shirt he wore that fateful day on our bed where Scott used to lay. It makes me feel closer to him in some way as though he’s sleeping next to me again, where he should be. Now I only pray for the day that he will be there again.
I know that things will get better. I know that we will be happy again. This road is long and it is dark and it’s hard to see the light that surely lies ahead. We had a really great conversation with the gentleman that had the pacemaker and his wife. They assured us that there is a good to come. Scott also received a phone call from Tyson Gentry, a young man who played football for OSU until sustaining a similar injury as Scott. Tyson was very encouraging and told Scott that it gets better. He said there are good days and bad days but ultimately, it gets better. We finished that call feeling touched that Tyson took the time to reach out to us and inspired to keep up the good fight and excited for the Bucks this year!
Please continue to pray for us as we travel this path that has been laid before us. Since things are going slowly and relatively smoothly, we’ve had more time to dwell on the grief a little more. We need prayers for strength to move forward. God will pull us through this but it’s so hard to see in this dark stage we’re in.
Tomorrow is the golf outing in Toledo and I want to say thank you to Chrissy, our Calphalon family and everyone who is putting this event together. Thank you to all our friends and family that are donating and participating. I’m sorry I can’t be there to see you all. I hope that you all have a beautiful day and you have a blast! I am looking forward to seeing everyone next weekend at the fundraiser in Cleveland. It’ll be a lot of fun and we have a ton of really great items up for auction such as tickets to the OSU vs USC game, autographed balls from some awesome professional baseball players, week long vacation destinations, and much much more! I am so amazed at the kindness and generosity that we’ve received from so many people. It touches my heart. I’m in such an odd place in my life right now. On one hand, I feel crushed and devastated by what has happened to us and on the other hand, I feel more love than I have ever felt in my life. I guess the love helps balance the grief.
Thank you all for your prayers. I’m sorry that I’m not the happiest me I can be. Scott and I are having some weak moments but I have faith that we’ll be happy again.