Hi everyone! I’m finally back. I apologize for my delay in posting but as I mentioned previously I had a big double move to attend to which consumed much of my time. Also, since the move I’ve been experiencing internetproblems with my new carrier so I am unable to post while I am at home. I would love to post more frequently while I am here at the hospital but I have been extremely busy learning Scotts care. I thought that as time went on this whole process would get easier but frankly it seems like it gets to be more and more difficult as we’re planning for Scotts discharge. There are just so many things that need to be done and it feels that I never quite make it through my list of things to do before about another 25 things get added!
So with much ado, I will bring you all up to date on Scottsprogress. As you are all aware Scott did get implanted with the DPS system to assist in his breathing. The machine was implanted through a laparoscopic procedure and it is basically is just a few wires that exit his body just below his chest on the right side. From those wires we attach an external pacer that we simply turn on and then it sends an electrical current to stimulate Scottsdiaphragm so that he can breath. This is not a painful procedure for Scott but it does take time to build the strength of Scotts diaphragm. At this point the longest we have been able to go off of the vent is one hour. During this time Scott closes his eyes and puts a lot of effort into his breathing. Our goal is to get Scott much more functional while pacing. We want to get him to go to his therapies while pacing, eat, drink and live life while it’s on. Scottsanxiety is really his biggest road block because he gets himself all wound up and over thinks the whole process. We know that Scott can rebuild his diaphragm strength and get off the vent and in fact, we are almost sure that eventually Scott can get off the pacer! The doctor that did the procedure stated that doing Scotts surgery was actually a bit tricky because Scotts diaphragm was moving on its own which means that the connection to his diaphragm was not severed in the accident. This means that ultimately there is a strong possibility that Scott will be free of not only vent but the pacer as well!
Scott is now able to have his cuff deflated enough to talk which really makes communication so much better. It’s nice to be able to understand him clearly and great for him to communicate his feelings and needs. The only problem with this is that Scott has really been quite demanding with his needs. He constantly wants to be rubbed, scratched, given something to drink, have his nose blown, his eyes wiped. For those of you who know Scott personally you know how much energy he has. He could never sit still! In fact, I remember on the day of the accident we were talking in the car about how different when it comes to being still. He commented on the fact that I have no problem stopping to smell the roses and he, on the other hand, can never be still. Later that day fate forced Scott to be still so now he has all this nervous energy and nothing to do with it so he tends to use his words as his movement. We have no problem scratching an itch or blowing his nose or catering to anyothertrue need but the constant massaging leaves us tired with aching forearms! Scott and I have had a couple conversations about how needy he has been and he has made a conscious effort to be more calm and less demanding. Now we are working on spending our time just enjoying conversation, movies and just the time together.
Scotts spasms have increased significantly so the doctors have increased the medication he takes to help control them. Our goal is not to complete omit them because they do assist in keeping his blood pressure up but they do occasionally get in the way of his therapy. The slightest touch of his legs cause his body to jolt. He feels the movement as an uncomfortable electrical bolt in his chest and when they are really strong they cause him to jerk his neck which causes a lot of pain. It’s still makes my heart skip when I see his legs move or his hands move. I always still pray that he is controlling it. I wonder if I’ll always do this or if in time I will grow immune to it. I guess I’m still expecting our miracle.
Therapy is going well for Scott so far. Unfortunately, we are not seeing any controlled movement anywhere else in his body exec pt the shoulder shrug that he has had. They have done several tests and at this point his biceps are still not back. They are still working on his range of motion and trying to keep Scotts joints mobile in case that miracle comes! Scotts favorite therapy is pet therapy. Last week, Scott had about five furry friends come up to visit him. I didn’t see the smile leave his face for the entire time they visited! Scott also had a visit from Rusty, his mom and dads dog which he thoroughly enjoyed. I haven’t had the opportunity to bring Kinsglyin yet and I’m actually a little bit nervous about it. Scott misses her so much and I know that she doesn’t do particularly well with new environments so I am afraid she will freak out which could leave Scott upset. I know that she misses him very much because every night I come home smelling like him and when I pick her up she immediately smells me and begins purring and rubbing her head all over me. I’m just afraid she won’t do a great job communicating this while Scott is in the hospital. Scott has started going to computer lab every weekday and in lab the OTs check his email and facebook for him. Since I know Kings will not be the best company right now I have started sending Scott daily pictures of Kings to his email. He loves it but I hope to somehow arrange a visit for him soon!
So for some really great news I can tell you that as of two days ago Scott has gotten the permission to be neck brace free! We are really happy about it because much of Scotts pain was due to the plastic of the brace digging into his scalp. He looks incredibly handsome without that big old brace on! Also the doctors allow him to wear a patch on his neck that slowly releases a muscle relaxant. Scott is still not allowed to have any pain meds due to the elevation of his liver enzymes when he takes them so this patch is a welcomed relief.
Scotts discharge date is quickly approaching so many loose ends are needing to be tied up. His discharge date is October 27th, however, from here Scott will have to go into an assisted living facility at least until December3rd. Medicaid in the state of Ohio will not pay for the equipment to get Scott home until he has been hospitalized for at least six months. At this point, Scott and I feel that this is a good idea until we get more comfortable with this injury. I have completed most of my training of Scotts care and I have to tell you that it is NOT easy. I hate the fact that I have to do things to my husband that are so private and personal. It is hard to be a caregiver and a wife and sometimes those lines can feel real foggy. I have learned to build a massive wall around my heart because that is the only way I can protect myself and to get me do some of the tasks that I have to do for him. I want to take care of Scott but I hate that I even have to. I hate that no one asks me if I’m okay doing these responsibilities and that it is just expected. I know that if anyone took the time to ask me if I’m okay doing it that I would for Scott but it bothers me that so many things are just expected of me. I wonder if anyone ever takes the time to consider what it would be like to have to catheter their husband or to do his bowel routine. It’s painful and oftentimes I feel that it’s just thrown at me with no regard to my feelings. I know I’m supposed to be strong for Scott and just bravely do these things that make me uncomfortable and I will but it doesn’t mean it doesn’t hurt me to do them. I always put on a smile for Scott and make jokes to make him more comfortable and he does the same for me but I see the pain in his eyes and I know he sees it mine despite my best efforts. I also know that in time this will get easier but at this point our past is still so tangible making me desperately miss the way we were before.
As I mentioned before there are a lot of things on my plate these days. I finally completed the move from the house as well as from the third floor apartement to the first floor. My parents, brother, Amanda and baby Anna came in for the move. The adults got an intense workout of packing and moving our goods all while climbing the stairs about 100 times and baby Anna provided entertainment during our much needed breaks. She even made it in for a visit with Uncle Scott! We moved his arm so that we could lay Anna in his arms. She snuggled up against him and he couldn’t stop gushing at how adorable she is.
I thank God for my moms persistence to join me for the move out of our house because that was much harder than I anticipated. I had told everyone that I was perfectly fine driving down down to the house and orchestrating the move with the moving company. I promised everyone that I was confident that not only could I do it I was actually looking forward to the six hour drive down to relax and listen to some tunes. Well, I was wrong! I am so thankful now that my mom and aunt Lynn joined because I was a mess. I kept imagining Scott everywhere in that house. I could see him chasing after Kingsly, typing in his office, opening the refrigerator and complaining of how hungry he was, cutting the grass, laying in bed. I couldn’t believe how clear those memories were. The crazy thing about me lately is how the things that I think that will be a breeze are sometimes the hardest and the things that I think will be incredibly difficult sometimes aren’t. I used to pride myself on my self awareness and lately I don’t feel that I even know who I am sometimes.
I have also been quite busy with bills. I received one of my first bills from Scotts hospitalization and I couldn’t believe my eyes when I saw the total after insurance. It was $61,000!!! I knew that this situation would carry a lofty price tag but I have to say that the anticipation of that didn’t stop my shock! I am really getting nervous about all the bills and the price of equipment. I don’t know how we are going to do it! Scotts life is priceless but I am really stressing about how I am going to be able to provide for him. I wonder how everyone in this situation does it. I am thinking I need to seriously consider playing the lottery!
Between the stress of Scotts health and the other responsibilities that I have many of you will be happy to know that I have finally broke down and begun running again and it feels great! It is the one thing that I do for myself and for Scott. I burn so much anxiety through running and I come into the hospital so much better for Scott. It feels great to burn my anger and resentment for this situation. My dad and I also found a great little running path through the woods near my apartment. I prefer running on the soft earth and listening to the sounds of the birds and the leaves versus the sounds of a treadmill or traffic! I also have been stopping at the beach on Lake Erie. I have found peace with the water again. I struggled with going near it because of the memories of the day that I pulled Scott from it’s grip. Now I have found peace with the gentle sound of the waves. I have always found God in nature better than I ever have in a church. These special moments that I take enjoying the last days of the warm weather have opened some more communication with God. I still question why God would do this to anyone. I ask God daily if he could just please grant a miracle and somehow fix Scott and make him whole again or at least give him the use of his arms. I question and struggle with everything but I am still thankful that Scott is here. I don’t know what I would do without him.
Please continue the prayers. There are so many needs both physically and emotionally for not only Scott but myself and our families! We are all struggling to fight this battle and I know with all of the support and prayers of all you and with grace of God we will make it through. Things will get better…they have to.