It’s just another manic Monday is a great description of today. I got here a little later today so that I could do a little research on our living situation post rehab. We are several months away from getting Scott out of rehab (maybe 4 months) but I need to get the ball rolling. Mom Fedor was here in the morning and kept me updated on everything that was going on. So I’ll start at the beginning…
Scott had another bad night last night. He is struggling with severe anxiety because of several factors. First of all, now that Scott has his voice back he doesn’t like the evening because they re-inflate the cuff in his trachea to help with his ventilation in the evening. He doesn’t like this because he can’t propel his voice over the cuff. He feels that he loses his ability to communicate well and he can’t ask for help. Scott doesn’t trust the “sip and puff” machine that he has at his lips to call for help so it comforts him to feel that he could alert someone of assistance with his voice. Secondly, when he does sleep his dreams of being able to move and when he wakes he realizes he is paralyzed and this nightmare is real.
His therapy went fine today. He was really hoping to be put in a wheelchair that lays down to a partially laying/sitting position today. OT wrapped his legs and we thought we were all set to go but unfortunately we had a bit of an issue with a lung plug. Scott had a really big block that was preventing him from getting full ventilation so they had to suction him for quite a long time so we missed our block of time for the wheelchair. Additionally, despite the fact that Scott gets repositioned every two hours, he acquired a bed sore on his sacral area. It looked like it’s increasing in size and discoloring so they didn’t want to risk placing his weight straight on the sacrum. Bed sores can be pretty scary so the staff does not want to mess around. These wounds can open up and expose the bone and can potentially cause an infection of the body. This is one area that can use some prayers.
Needless to say, Scott feels really discouraged today. His counselor came in and he expressed to her that last night he didn’t want to fight anymore. He said he doesn’t feel that way now but he’s so tired of the way things are going. She gave him some advice on how to make the evenings better. We set up a boombox that plays some relaxation music that supposedly will put anyone to sleep in ten minutes. I am praying that it works. Scott needs his sleep which I believe will help his spirits. I personally feel that my stress levels correlate directly with my rest. I definitely can handle stress better with a rested mind.
Scott is still drinking a lot and he is enjoying his intake of kiwi strawberry or lemon lime Gatorade. I can’t tell you how happy I am that he passed his swallow test on the first trial. I’m also grateful that Scott is able to talk so well over the vent. We’ve been told that these are two really big accomplishments. Our favorite RT said that she feels that she can get Scott weened off the ventilator in about two weeks. The doctor isn’t quite so certain because he doesn’t feel that Scotts lungs are strong enough. I personally feel that although Scott is petrified of being off the vent because he isn’t very confident with his lungs I know he strongly desires to be free from it. I also know anything is possible with prayer and I know we can do this. Just a short month ago we were told there was a strong possibility that Scott would always be on the vent and now everyone pretty much feels that he will get off eventually.
So today has been one month since the injury. I feel that this has been the longest, most trying month of my life. I really can’t believe it’s only been a month since this nightmare started. I look at my life before the injury and everything looks so bright in my memory. Post accident everything seems so dark. I know that we have had a lot of great, positive steps forward and we are progressing but it’s still hard to really wrap my mind around this. I’m so grateful for our daily miracles but another part of me wishes we didn’t have to even be here. I loved our life and I know that we’ll be happy again but with a new norm. Part of me wishes that we could go back to our old norm.
It’s so hard to watch Scott suffer. For each step forward, there is a lot of pain both physically and emotionally. My brother tells me that everyday I need to just put my boots on. He says just showing up and facing the day is half the battle. I know this is true because that’s all that I’ve done since this happened. God has done the rest. I sometimes feel bad when people say that I’m so strong because I’m NOT but my God is. I would be embarrassed if someone really see inside my head because I am petrified. Matter of fact, I am fairly confident that I’m the polar opposite of strong. Prayers are pulling me through this.
I have a song that I like to listen to when I get upset it goes, “I will learn to let go of what I can not change. I will learn forgive what I can not change. I will learn to love what I can not change and I will change what I can.” I think the words pretty much sum it up. I know we’ll get through. I’m even pretty sure we’ll eventually be be better people because of this accident. In the meantime, it’s a daily battle to change the things necessary to get to that point.
Since today is the month anniversary of the accident, I decided to read through various pages of the guestbook. It amazes me still that we’ve had 19,055 visits from friends and family! I really want you all to know that there have been many days that your posts have been the glue that has held me together. I’ve stated before how your words have touched my heart and inspired me. I wish that I could reach through my computer and hug and personally thank each one of you! You have NO idea how much you’ve helped me not to mention Scott and our families. I am so grateful for all you’ve done from prayers to positivity you’ve pulled us forward on this path. Please continue to pray for strength, courage and faith. Your prayers are being answered and we are beyond grateful!