June 9, 2016
Just when I think I can’t even breathe anymore, reprieve comes! Satan is a real being! I awoke thinking, “Here we go again!” It took me forever to get ready. I felt absolutely exhausted. After our week and the horrendous day yesterday, I could hardly think of going to the hospital. I wish I had a direct line to read Jonah’s updates before I get to the hospital, so I know what to expect and prepare for. I have a genuine anxiety issue as I make my way the few short blocks to the hospital from our home. I dread getting out of my car. The walk to the elevators goes too fast. I find that I am holding my breath as the number “5” appears in the small glass window of the elevator and the soft melodic ping sends a shiver down my spine both signifying, I’ve arrived. “Brace yourself,” I say to myself, as I pick up the phone to tell them I am outside the unit doors.
Today, as I was leaving for the hospital, I received a call from the Nurse Manager (NM) of the Neuro-rehab asking if I could come see her so we could discuss the puzzling events of yesterday. I like her; she is kind, empathetic and real. I brought Austin with me and Chandler met us there. I wanted them to tell their stories so it could be as accurate as possible. The NM invited the Social Worker into her office too. The NM said she was concerned as she received the text from Dr. Physical Therapist, stating that Security had been called. She said she called the unit and said, “Please tell me that you did not call Security on this family.” She was assured that no one had called security. As Austin retold their story about the security officer coming off the elevator and Jon asking her if they had called security on them, and the Security Officer smiling at him and saying, “Yes.” Then Austin seeing her walking down the hall towards her and Austin asking if security had been called on them and the officer answering with a smile and, “Yes, are you scared?” and then walking on, it occurred to me that it could have been coincidence. This officer could have been on her way to the unit anyway and had no idea what had just transpired. We told the NM that the security officer and the Tuttles knew each other from being comrades in the ICU, all of us becoming friends as we were both mourning loved ones within those rooms. The NM said that security comes up to the unit on a regular schedule to check on things. The NM felt that coincidence is exactly what happened, too.
The NM told us she wanted us to feel safe with Jo in the unit and asked what they could do to make this happen. I told her that I didn’t want Jo to be without a sitter for one second, even if Jo had a visitor with him. She assured me that he would always have one. This was my biggest concern because I knew that the aids knew how to handle the situations we had been trying to manage by ourselves in the previous 24 hours with Jo.
The meeting ended and I walked the short distance to Jo’s room and gowned up. I was told that he had had a great day so far; there had been no vomiting since the night before. Jo had rallied through morning PT and then his shower without becoming violently ill. The relief was profound for me!! The girls and I talked with Jo for a bit and then Occupational Therapy came to get him for therapy. I didn’t come back until evening. I was feeling freaking sad and mad because Tom had, yet one more stupid responsibility and I was, once again, off to the hospital by myself!! I just prayed that everything was good there. When I walked into Jo’s room I was relieved and shocked that he was sound asleep. It was only 8:00 PM. Jo has had such a hard time sleeping since being at the new hospital. I had brought all of the posters we had made at the old hospital and put them up in his room. It cheered things up. I put the new oil spray I had made for his “forever healing” wounds. I rubbed his feet with lotion and pointed out a good-sized flap of skin on the side of his heel to the CNA, which was new. It looked like a tab and if you pulled on it, it would peel back a large chunk of skin, clear into his heel. We decided to put some of the oil on it to soften it, and bandaged it so it wouldn’t catch on his sheets and blankets. I then read to him a bit from a book that was bought for him about adversity. Jo looked like he wanted to sleep and so at 9:30 I tucked him in by placing a pillow under each leg and each arm, having prayer, and giving him a hug and a kiss. I made sure he had his iPod and phone right next to him and place the TV/Nurse call at hand’s reach. I am soooo thankful for good days!!!
Jo’s CNA tonight is one of my favorites. Her countenance is bright and shiny, she’s cheerful with a brilliant smile, she’s optimistic and out going. She asked me what foods Jo likes to eat. She pulled out a paper and pen and started writing down my thoughts and then comparing them to what is offered on the hospital menu. She said, “I’ll bet he’d like this” and “maybe he’d like that, on the menu”. I asked if I could make Jo one of his favorite dishes and she said she thought that was a great idea. She was up helping put up the posters and commenting on the statements on it.
June 10, 2016
Jo is getting better at holding himself up and getting himself to his electric chair. He bragged about doing it all by himself today. Jo’s CNA today is another wonderful man!!! He’s so positive and kind and attentive and has an incredibly calm disposition. He saved Jo’s food receipt, which shows what he got for lunch. He had written on the receipt the percentage of each food Jo had eaten. He told me, “I’ve noticed that when I take Jo out of his bed to feed him, he eats better. I take him down to the private eating room. Today he ate 100% of everything.
When I walk into the room he tells me he feels sick today and he said that the pain in his head was a 3 or 4 at one point. He looks like he feels sick today. He’s been complaining that his PEG tube and the area around it, is hurting. I have been telling his nurses this for days and they come in and look and say, “It looks good!” Yesterday’s nurse said something like this, “Jo, a PEG tube is not normal. It isn’t supposed to be there. There’s probably going to be some discomfort with it, but it looks good cowboy!” I am sorry, but what the “F” is that????? Jo wouldn’t even look up at him while he spoke. I could see the hopelessness in his face. I accidently brushed the PEG tube site today and Jo yelped and jumped off the bed!!! Is that normal??? It looks good though!!! What the “F” am I supposed to do?? I am not this type of person, but I want to punch a wall sometimes. He threw up that lunch he ate 100% of and everything else that was possibly in his stomach!!!! He eats, he vomits. He eats, he vomits and everything looks good. There is something missing. He went through an entire day of physical therapy yesterday and didn’t throw up. Today his tube is really really sore and tender, MORE than it has been and it seems it has been working its way to this state. Another issue seems to be the vomit/headache cycle, Jo begins to throw up and it hurts his head, then he throws up because his head is hurting, which hurts his head more, and on and on it goes.
I have realized how to describe what I am feeling with all of this crazy fear, as I am witness to what is going on with Jo. It is like having a crazy, insane, phobic fear of snakes or spiders and every single day you know you have to face them and be inside a container of them to be with your kid. The spiders and snakes graze you as they are moving all around the container some of the days. On the really crazy bad days you find them crawling on you and you are going out of your mind with fear and the nurses and doctors are looking at you all the while saying, “Oh, It’s Okay! They’re just spiders and snakes and they probably won’t bite!!!” The not knowing is almost too unbearable as I watch Jo suffer! If he hick-ups, burps, brushes his head, runs his hand across his belly, moves his legs, signals something . . . I jump and I crawl out of my skin as though someone jumped out of a dark corner and screamed “BOO”. I honestly want to die!! And I feel like a complete failure when I can’t stand there and watch. It is horrific and excruciating to not be able to alleviate the suffering in some way while he is looking at me through those eyes! I don’t even know what to pray except, “Please strengthen Jo to bare this suffering and help me stay strong!" I feel like I can’t do this anymore. I completely understand why people turn to drugs!!! I LOVE MY BOY!! #JustWakeUpJonah