Apologies for the radio silence the last few days, but we're getting our feet under us. I'm happy to report we have a pretty good routine going now. Thursday we drove home in record time. We stopped in South Hill to empty Rich's drains and pee and again in Emporia to deliver pain meds. All told we were only 15 minutes slower than our usual time.
I pulled the van right up to the front door and we all hovered around Rich. Previous to this, it was hard to convince him to get out of bed at all, particularly with wound manager leak PTSD. But when we got home, he got out of the car, walked up the steps, headed straight to the office and logged onto his computer to start checking things. We all stood around gobsmacked. I had scripted that it would be a challenge to get him directly to the bed and that would wear him out, but here he was grumbling about how my parents had changed his home page while he was gone. Those mutterings were music to my ears.
Shortly after we arrived, a nurse from Sentara Home Health came to set up his TPN and IV ringer. He gets 4000 mL of TPN overnight as well as two 1000 mL bags of lactated ringer IV fluids at some point during the day or night. This was when we learned they didn't provide an IV pole for us because they provided a backpack for the TPN. According to Google, 4 liters of fluid weighs almost 9 pounds. I'm not sure why they thought he could strap that to his back and just mosey around the house. Needless to say, we got an IV pole by the next day. It's not very useful for the TPN, though, because it's so heavy, it can't even stay situated in the backpack. So from 8pm to 8am, Rich is stuck in the bed connected to the bookcase where his TPN lives.
After the nurse left, his TPN pump started beeping about low batteries. After changing them several times, we called for help. Since it was a holiday weekend, it was hard to get someone on the phone at 1am, but Megan toughed it out. She got up every hour all night long to replace the batteries so that Rich could still get TPN. There is a special place in Heaven for her.
Once we got new pumps and an AC adapter, things started going much smoother. Last night was a relative breeze in that Jessica only had to get up once at 4am to deliver pain meds and empty drains.
Today has been a flurry of activity. Angela took Ian to her house for most of the day to play. More importantly, she traded my kid for her husband Tom so that he could deep clean my house. I don't think my house has looked this good since we moved in. He ran out of time to finish all he wanted to, but I don't care. He mopped my hard wood floors, dusted my TV console, cleaned every surface of the kitchen, and I don't even know what else. Meanwhile, Jessica sorted all of our laundry back to its proper places so I can stop living out of suitcases and laundry baskets. She also weeded out all the horrible socks Rich had lying around. We sent them to a farm to play with other mismatched worn out socks. Lastly, Rhiannon and Eirikr brought by all the groceries from my list I sent them. Yogurt for everyone!
When I write my book on how to flourish while dealing with cancer, there will be a chapter on the home care room setup. We moved the TV closer and hooked up a new blu-ray player with Netflix thanks to Curtis. We put nightstands on both sides of the bed that are forbidden from holding anything medical so Rich doesn't have to worry about bowel drain cups sitting precariously close to his lemonade.
I bought a small flip top trash can for $10 that holds two urinals perfectly. This allows Rich the autonomy to piss on his own schedule without having to call out for help and we just empty them every four hours or so. We used one of those square shelving units that fits the little fabric bins to sort out medical supplies and it's on the wall next to the bed. We installed a baby gate to keep the dogs from getting back there and accidentally stepping on Rich's foley bag. I brought the drum throne home from the office to act as my bedside chair. We're using a TV tray to setup only when needed for medical items.
We have two new locking trash cans. The one in the room with Rich is strictly for odor free trash, so no bowel wipes, gauze remnants etc. There is another trash can in the bathroom for that. I stole Curtis' old IV pole to install next to the bed permanently for IV ringer and the one from Sentara is out in the house should we need it there.
Tomorrow I'm going to work on setting up the bathroom a bit more. I might try to soak and clean Rich's feet the next time he's out of bed, because they are crazy dry. I also bought one of those head massager little wire things on an impulse. Since we can't wash his hair yet, we can at least rub him down.
As for Rich, he's doing pretty well. It's hard because he doesn't feel like things are getting better, what with the patient being the worst judge of how they're doing. But I am so glad we went home. He has many more options in the house, all his stuff is here, and he can hang out with our son.
We had a nurse stop by today for a general assessment. I wanted her to look at the bowel manager but when she arrived I realized she's an IV nurse and not an ostomy nurse. She was at least honest that this was out of her league. She asked if we had daily nursing visits and I told her no. She rolled her eyes in frustration and I assured her that it was offered, but we waved them off. I am setting up his TPN and ringers and managing his drains, we just need a consult on the wound manager replacement by Monday (which she assured me would happen).
She looked at me in shock and said, "So you're a nurse? Or a doctor?" I didn't understand at first, but just told her that I'm a quick study I guess. After being in the hospital for a month, I kind of know the routine. She smiled and said, "Oh, so you basically are a nurse!" Pretty much.