They have gone on vacations and to camp, etc before and Dale and I have gone places without them as well and we obviously missed them, but this was different. Almost two months that I did not get to see my youngest son and only once that I got to see my other children. It is one thing to miss them when you are having fun or know that they are having fun. It is entirely different when you are sick and don’t know when or if you will see them again. I have been told by many physicians that had I not been at Mayo during all of this the chance that I would still be alive is very, very slim. I am so grateful to have been there but being 10 hours away and sicker than you have ever been is scary.
After seeing everyone, we began the huge task of trying to get me settled in. I still needed a lot of care when I got home. Almost constant care. After my tracheostomy was removed, I was left with a hole in my neck. A special bandage was placed over it that was non breathable so that I could talk and it could heal shut. When we changed the bandage I could not speak as all the air came out of my neck and I sounded kind of like Darth Vader.
When I went in for my second and third surgeries where they removed the remainder of my stomach and part of esophagus and then connected them the following day the left part of my original incision open from my sternum down through my belly button. A wound vac was placed on that area while I was in the hospital and when I came home it was dressed with a wet to dry dressing that we had to change 2 – 3 times a day until totally healed shut.
I also had lots of “holes” that were in various stages of healing. My feeding tube had been removed. I had a total of 7 tubes in my chest, 4 on the left side and 3 on the left. I also had a couple additional drains in my abdomen. These were raw or scabbed and itchy. The day before I left the remainder of my staples were removed from the upper part of my incision that starts on my back and wraps around my ribs to my sternum.
All in all a combination of pain, numbness, itchiness, tightness, burning, irritation and did I mention pain??? Trying to get comfortable was almost impossible and so was getting up. I had learned to get up and out of bed by myself while in the hospital but it was with the aid of the adjustable hospital bed. Thankfully, it was summer and at least one of the kids was always home if Dale was not to help me get up.
The first couple of weeks at home are a blur. Lots of dressing changes, lots of pain, lots of vomiting, lots of retching and dry heaves and foaming from my mouth. My mouth seemed to be producing enough saliva for 10 people and just swallowing my own spit could make me start retching. I had a bowl to spit in when it become unbearable. I was in and out of the ER for pain, pneumonia, bowel obstruction, severe nausea and unable to eat or drink. Panicked almost constantly. That I would never get better, that this was my new life, that I would get sent back to Minnesota, that I would get addicted to the huge amount of pain medication, that I would never learn to eat.
I had about a month that went by that I would be walking from one room to another and pass out without warning. This led to me having to have someone walk with me all the time and use my walker even when going a short distance. Sometimes I couldn’t even stand up after I went to the bathroom. I cried a lot.
I questioned God….why was I still here??? I was sure that I was not strong enough to overcome the obstacles that I was facing and began to wonder why I had fought so hard for “this”. My kids would come in my room and sit with me and I could see the tears in their eyes and the pain on their faces. My husband was exhausted. Working full time, taking care of all the household responsibilities, the kids and their activities, and being my caretaker full time. Not one of them complained. And then I realized again why I was fighting through this. It wasn’t for me. I am not afraid to die. I have prayed for God to take me on more than one occasion to selfishly relieve my own suffering. There are so many things that are way worse than dying. Deciding that this life was worth fighting for no matter what was in store for me was a process.
I don’t know how long I had been home when I had a 5 day stretch that I could not eat at all. The first two days of that I could keep fluid down but that was it. I had almost constant retching for 5 days straight. I cannot even explain the sounds that come out of my body now. It sounds like there is a dragon inside me screaming to get out when I have these retching episodes. There is no hiding that sound. Finally on a Sunday night I was so weak and could not take retching any longer. We had tried everything that we had for nausea and nothing was touching it. We arrived at the hospital and I was immediately admitted and started on TPN since I had already been five days without nutrition and even with all their medications, I was still retching. After another week or so in the hospital, the retching stopped and I was again eating small amounts of soft food and liquids again.
That summer was the longest and hardest of my life. It has changed me in huge ways, both good and bad, physically and mentally. I have developed a huge appreciation for the elderly and disabled. Going from being able to virtually being able to do whatever you want, whenever you want to having to depend on others and having your body fail you physically in so many ways when your mind is still clear on the things you want and need to do.
It is simple things that are so hard to accept that you cannot accomplish. Taking a shower by yourself, walking by yourself, driving your car, cleaning your home, doing laundry, eating, getting to the bathroom, going outside, cooking, even going to an appointment alone. Always needing help. Always at the mercy of someone else. Always feeling like you are an imposition. I at least had the goal of getting back to a “new normal” and strength to get my independence back. I have always had a special place in my heart for people living in nursing homes but even more so now. Living your life that way and knowing that you are never going to get stronger and your body slowing failing you seems so unfair, especially if your mind is still intact to feel that you still want to do all the activities you used to do.
I remember the first time that I walked down our driveway and made it all the way to the road and back. I felt like I had ran a marathon! I was sweating and on the verge of passing out from the exertion, but it was a beginning of getting back to living.
Frightening and confusing memories haunted me almost constantly those first few months. That is when I received my diagnoses of PTSD. While in ICU not only did I develop severe anxiety, it turned into delirium. I had scans of my brain to rule out other reasons for my altered mental status, medications were changed, labs were constantly drawn, I had a psychiatrist come in almost daily. I have never been asked so many basic questions in my life….and not been able to answer them. Weirdly, I can remember the constant questioning of where was I, what day was it, etc and thinking how stupid they were for asking me that and then the feeling when I could not answer or did answer only to be dead wrong. I had to pass a psych test before I was dismissed from the hospital and passed with flying colors and it was so weird as they had given me that test several times and it was impossible. That last time it was just common sense things and time and place. I passed with no problem. The mind is an amazing and unique thing that I will never fully understand.
Losing time. Back to reality and spending time with family and friends in my home and listening to conversations around and realizing that I do not have a clue as to the things they are talking about. Seven weeks doesn’t seem like a long time until you lose the majority of those seven weeks and the only memories that you do have are not all real. I spent and still spend a lot of time trying to remember things from that time or at least be able to put what I do remember into the correct time sequence.