After my last post, I heard from a truly amazing (seriously, wow) lady, Tessie Friedli. I realize that so many children are suffering and my heart breaks over and over for these little ones and their families. But I feel a strange connection to her angel, Dakota. We are 35ish years apart in age, have never even met, and have totally different struggles. However, watching his progress and seeing our similarities brings so many emotions to the surface. Nearly every time I read their blog I find myself crying, then smiling and then cheering!! What may seem small steps for others are HUGE in his world and much of his parent's feelings mirror my own. Friedlis, you are in my heart and on my mind more than you realize and GO, FIGHT, WIN, DAKOTA!!
Tessie had some very thought provoking questions and while I initially was going to answer in an email, I realized that I wanted my own record of my answers. So here they are.
Q. Did you understand everythying just fine after your stroke? A. Yes and no. I could understand what people were saying, and even loved watching movies b ut I didn't understand the gravity of it all. I remember thinking that I really wouldn't need rehab because I would be fine in a few days. Even months later while discussing leaving the hospital, my mom said I would be living with her after my release and I thought, no, I will be fine at home. I even had the nurses pump my milk for the baby for a couple of days before I realized that wouldn't work long term. And stopping nursing cold turkey...ouch!
Q. Did everyone around you that mentally you understood it all. And was signing your only way of talking? A. At first, I was on the vent so talking was not an option. I'm not sure why but I just started signing. My right hand was and is nearly useless so most signs would not work. But I could use my left to do the alphabet and a few signs. It was the only way I could let people know that I was still me. When they took out the vent, I could talk. However, what I thought were words were really just gibberish so again, I signed. After only a day or so I started coughing and gasping and I just remember a rush of people and someone yelling, "Stay with me!" before I blacked out. I woke up with my trache. And the gurgling noises made by the tubing for it drove me nuts! But after that, signing was my only way to communicate. I was unable to write or even make any sounds. Thank goodness for signing! It was very frustrating, though. Most of my family quickly learned the alphabet, which shows how ready to help they were. But you try spelling out sentences and see how mixed up everybody gets. One time I spelled out t-w-i-c-e to my mom and niece. They were totally confused and kept repeating, "twikee?" Arghhh! And Most of the staff din't understand any. I used to hate it when my family would have to leave me because I felt helpless. One doctor knew a few letters and he was so wonderful to just sit and together we would figure it out. I will never forget his patience. I also had one CNA and one nurse who knew enough and they took it upon themselves to teach others a few very helpful signs. I will always be thankful to Signing Time videos that I watched with my kids. Signing is a huge reason I am where I am.
Q. What did it feel like to get suctioned out your trache? A. Terrible. Before it got suctioned, I felt like I was drowning. I probably really wasn't, though. When I was getting suctioned, I felt fine for a second, but it seemed like they took forever to do it, and I would feel like there wasn't enough air and get all anxios that I would not be able to breathe and pass out. Occasionally I would motion for them to hurry or even stop. It was scary for me. But I had one nurse who was great! Just before she would put the tube down, she would start holding her breath and not let it out until she was done. That way she had a better idea of what I was feeling.
Q. When you said you were walking down the hall...you had enough muscle strength to walk at that point? A. I would use the word "walk" very loosely. More like they were holding me upright and dragging me down the hall. I remember onceI grabbed the bed rail with both hands and attempted to roll over. Everyone was cheering and happy because I had been able to raise both of my hands. I remember on a home visit before being released, I was trying out a recently installed grab bar. I couldn't pull myself from a sitting position to standing, yet I couldn't release my hands from the bar, so I was just stuck. In fact, a lot of time in therapy was spent just building up my core to be able to sit unsupported, I still prefer chairs with backs, can never do a push up without collapsing onto my face, and I break out in a sweat while using 5lb weights. I often have my KIDS carry things for mommy.
Thanks for the questions. These are things I want to write down but it has been so long, I forget!!