Yesterday evening I left the hospital for a bit to get some dinner. When I got back, I found Ryan on the floor in his room, groaning in pain. I was scared, and frustrated. When he fell out of bed, his catheter broke, and all of his leads (reporting his heart rate, respiration, etc.) ripped off. There were three or four nurses sitting less than 20 feet away, next to a big monitor that showed that Ryan's leads were no longer attached...I should not have been the one to find him like that. They couldn't even give me a straight answer when I asked when the last time they had checked on him was ("not long ago" isn't a very specific response...). And this was after I had specifically asked his CNA and his nurse to keep a close eye on him because I was leaving to get dinner! *sigh* Fortunately, his G-tube was still in place (the one that goes into his stomach that they put food and medicine through), and he wasn't seriously injured. Ryan claims he was trying to get up to go to pee, and that he had "only been on the floor for about a half hour," though I recognize his ability to judge time is severely impaired. But after we both recovered from the shock of that incident, we had a great rest of the night, laughing and talking together. We were up until midnight, and I felt confident that he would sleep better.
Well, I turned out to be wrong. As soon as the lights were turned off for us to go to bed, Ryan's anxiety hit him like a semi-truck. For hours I sat by his side and tried everything we could think of to calm him down. We tried a variety of medicines, but nothing seemed to be able to break that hold the anxiety had on him. It got so bad that he was hallucinating, and he started refusing to believe anything I said to him, claiming it was all lies. He thought he was stuck in a tiny car, and when I tried explaining all of the things around him, he kept saying, "That's just what you want me to believe. It's not real!" He started rolling himself onto his right side, which is a new ability for him! But it also means he was close to rolling out of bed multiple times. Eventually, he didn't want anyone to touch him or move him back into a more comfortable position because "there was no room in the car" he was in.
I don't exactly remember when we finally both fell asleep, but it was probably around 5 or 6 am. Around 8:30, Ryan was awake and apologizing for "being such a burden". :( He tried explaining what he had been going through, and I tried explaining what had happened from my point of view. He apologized for not trusting me, but it was a pretty traumatic experience for him. He has been trying all day to piece things together in his mind and understand what was reality. He made a comment about how "they" probably had put him in a TV show about comedians riding in cars with Jerry Seinfeld, and how he'd try not to get angry about them making fun of him.
We did speak to his NP (this whole time I thought she was a PA, but she told us today that she's an NP) about finding something to help him sleep at night, because everything we've tried so far has not been working -- Ryan's anxiety punches right through it all. Tonight we will start by sleeping with the lights on.
We got Ryan up and in a chair, spent some time outside, and walked around the hospital halls again this morning. He ate lots of ice, and was in a great mood. When his physical and occupational therapists came to work with him, Ryan showed them that he could roll onto his side. His physical therapist had tears well up in his eyes at the sight! Ryan really is making remarkable progress! After working with his therapists for a while, Ryan ended up getting pretty nauseous and light-headed. His blood pressure was fine, and his blood sugar levels were fine, but he still didn't feel well. :(
After waiting all day for his speech therapist to arrive with food for him, he wasn't feeling up to things when she did get here. She said that she has a different schedule this next week though, so she will be here on Sunday morning to work with Ryan and get him eating some food.
Ryan's physical therapist would like to get approval from the insurance company to increase the amount of time Ryan can get for physical therapy each day. He wants to help Ryan work towards getting into an inpatient rehabilitation facility. We'll see what happens this next week.
My nerves have been steadily increasing as the girls and I prepare for a trip to New York this next week. Nicole and I had been planning this trip for almost a year -- going with my parents to New York to see where they served their mission and visit some church history sites. The plan was for Ryan to take Becca camping for a week while Nicole and I were gone...but now we are going to bring Becca with us while Ryan's mom stays here with him. I have made this decision a matter of prayer, and I know that my girls need some time with me. We've had so few days together this summer, and I don't want them to feel like orphans. Even Ryan agrees that I should go, but then he forgets when we'll be gone, or how long we'll be gone...leaving my best friend when he's hurting so much is really hard. Extra prayers from everyone would be hugely appreciated! The plan is I will take our girls home on Sunday to make the final preparations for our trip and stay the night at home with them. On Monday we'll come see Ryan one more time before flying out to New York.
Each day that I get to talk and laugh with my sweetheart is a miracle! He is suffering so much, and fighting so hard. Today he admitted that he feels a lot of pressure to make giant improvements each day, because everyone keeps telling him how miraculous his improvements so far have been. It's hard to find a balance between being encouraging and supportive, and being overly pushy. I told Ryan that I will try much harder to let him take this rehabilitation thing at his own pace.
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| When I drive by this sign, it makes me smile. |
Ryan's brother, Tom, was able to visit last weekend, and I asked if he would share his thoughts with everyone on here. Here is what he wrote:
- Last weekend my wife, kids, and I were fortunate to be able to visit Ryan. His improvements were inspiring. Just 3 weeks ago I was giving up on him. The prognosis from the doctors was depressing and I couldn't imagine Ryan living the rest of his life that way, let alone Jenni taking care of him for another 50 years. I wanted it to all be over. I talked to his nurse about the possibility of them "pulling the plug" on his feeding tube and letting him go. I was depressed and sad and quite frankly resembled Doubting Thomas. Hundreds were praying and fasting for a miracle and I was running away from it. I had consigned myself to mourning the loss of my brother. Our visit with Ryan woke me up.
- The faith and prayers on his behalf have reached the heavens and a "miracle" is the only way to describe his condition. As I talked with Ryan I couldn't believe that once again we were having a conversation, something I thought would not happen again in this life. He was coherent, he answered my questions, and he cried with me as we spoke of the emotional pain he was in. But he is there. He is alive and he is feeling!
- At one point during our visit the nurse came in to check on Ryan. The nurse and I asked him some questions to assess his ability to remember things. The nurse asked Ryan how many kids he has. I waited in hesitation as he thought about it. "Two" he said, and I sighed with relief. The nurse then asked how old his kids were. Again I held my breath waiting for his answer. After a pause he said, "one is a thirteen year old.....boy." My heart dropped thinking he had forgotten Nicole, and then he turned his head to me and jokingly smiled. I lost it and started laughing. Ryan started laughing. He laughed so hard that the little cap that was covering the trach in his throat shot off and hit the nurse right in the face! It was hilarious. We laughed harder and the nurse joined us.
- What a great experience to see Ryan's personality still there.
- I love my brother and I love his wife for what she is doing for him. I love Ryan's two girls who go on living life with that pure childlike faith that drives their Dad to keep living. I love the Lord who has allowed this miracle in our family.
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