Hospital Bed Transformed Into Day Bed

Can five days really have gone by since the last blog post? That's shameful. Time flies in blog land apparently. It's not going quite as fast in hospital land, but we'll get through it. Ryan wanted to write a post with me two days ago, but he really wasn't feeling good enough and it never got done. Then he insisted he would write a post himself yesterday, but that was the drugs talking. He spent a lot of the day sitting up in his bed with his eyes closed, saying he didn't want to lay down or he'd fall asleep. This is cute and sad at the same time. 

The update on how he's doing physically is a little bleak. The mucositis is progressing and is extremely painful. I know the kepavance probably prevented it from being worse, but it's still plenty bad. He has a suction tube so that he literally never swallows. He had one medication that doesn't have an IV form so he was still trying to swallow that in pill or suspension form, but it is agonizing so they decided to ditch it for awhile. His liver will have to fend for itself for a few days until he can swallow again. Today a nurse told us a lovely story of a patient with mucositis in the pre-kepavance days that coughed up his own uvula. I thought I'd share that pain with you all. Sorry, I feel bad about it already but I'm not going to delete it. We're really grateful the mucositis isn't worse, but it's still the most painful thing Ryan is dealing with right now. To give you an idea, he says that swallowing is easily more painful than getting a bone marrow biopsy and even more painful than when he broke his arm a couple years ago. He has a very hard time sleeping due to the mouth/throat pain, aches in his leg bones, digestive tract issues, and headaches. The pain pump helps. To me, he looks a bit better than earlier this week. Here's to hoping it won't be worse tomorrow. That is our dearest hope right now. It will be really exciting when his counts start to come up and things start improving. Starting tomorrow (Day 8) they will be looking very closely to see if there are any signs of engraftment (a good thing) or acute GVHD (a bad thing). 

I don't know what else he wants me to give an update on. We've been working our way through the audio book Bossypants by Tina Fey. It's a perfect book to listen to right now because it makes me laugh and it doesn't matter if Ryan sleeps through half of it- it's not one continuous story that you'll be confused about if you miss a part. He still enjoys the parts he hears. This afternoon we rearranged his hospital room. This is a much bigger deal than you realize. The room is a positive pressure room with a hepa filter running all the time. This is great for keeping out germs but it constantly blows cold air right where the hospital bed was. It was Ryan's biggest complaint about the room. So now we rearranged the whole thing and it's much better. The bed isn't in a wind tunnel anymore, the room feels bigger, I have room to stretch my legs out, Ryan has a great view from his bed (this is reminding me of that O. Henry story about the last leaf for some reason)- anyway, it's all very pleasant. I got the idea from a seventy-year-old guy across the hall. I feel like all we need is a rag-tied oval rug for the middle of the room and we'd have ourselves a stunning sitting room. That rug is probably against hospital policy, so never mind.

We really love Jessica. I feel that this can't be said enough. She is loving, smart, hard-working, generous with her energy and time, and an amazing friend. She and Elliot are taking such good care of our boys. We deeply appreciate what they are doing for us and it means so very much to us. 

We also love the nurses, CNAs, and doctors here at the hospital. They are fantastic. We've had some visitors this week (and we've also cancelled on quite a few because Ryan just wasn't up to it), but we were really happy to get to see Becca, Elliot, my mom and dad, Angela, both the Scotts in our life (Bonnett and Ashby, henceforth to be referred to as Scott A and Scott B, grade-school-style), and Terri. We love them and we love all the people in our life- that is what it's all about.

Ryan is hooked up to six different lines at all times. The TPN for nutrition, the pain meds, fluids, Tacro, Invanz, Micafungen, Vancomycin, Acyclovir, Levaquin, platelets or red blood, an O2 sat monitor- he says he finally feels like he's getting his money out of the nursing care fees now. They're in the room a lot, switching out meds, changing dressings, taking samples, etc. Good thing we like them. Ryan used to be the easiest patient here, but he's definitely stepping up his game. He keeps them hopping. It is very nice though to walk into the hospital and know almost everyone's name. It feels like a home away from home now- so different than the first time we walked in last March. Even when they use the cleaning product that smells bad, I don't mind. It's just nice that it's familiar. Also, maybe I can't smell how bad it is anymore because I'm used to it. Probably like when I worked at a dentist office- pretty soon I didn't notice that bad dentist-office-smell. And I didn't know I smelled like it when I came home. Nice for me, not so much for Ryan.

Well, Ryan is napping. The room rearranging and shower have completely exhausted him. The medications are hitting him hard as well. They give him a dose of Benadryl before the Vancomycin because he has a reaction to it. The combination of Benadryl and Fentanyl (pain med) makes him really sleepy. I'm always glad when he can relax enough to sleep. I hate seeing him in pain. We're going to count moving hospital furniture and showering as his workout for the day. 

I'm rambling now, so I'm going to end here. Photo of the day is a few of my favorite people: Jessica, Valerie, Jacob, Jonas, and Annalisa. This was a New Year's Eve party a few years ago, when Jessica organized onsie pajamas to be worn by all.