Up and about

We've covered a lot of ground in the last week. Some smooth and some rocky. I made Rich take a shower on Sunday using a shower chair, wrapping his PICC line and covering his dressing with a shower curtain. He was Not Happy. Because he was so unhappy about it, he was less than kind to me. But he got clean and we both survived.

Tuesday we had a visit from two Lisa nurses. Our IV nurse is Lisa and the wound nurse is Lisa. Wound Lisa got us a new wound manager pouch that I like better. Who knew I could have such strong feelings about pouches but the door is awesome and the wafer sticks a little better. We also experienced the joy of no sting spray adhesive remover.

Of course as soon as the wound nurse left, we got a leak from the new pouch, but I saw what she did wrong and fixed it. Crisis averted.

Today has brought all new kinds of progress. Rich is in much better spirits. He's joking a little and fondling me as I work on his IVs and dressings. We got approval for foam dressing on his top sutures and those only need to be changed once every three days versus three times a day. He's weaning off of Vicodin and we're moving over to liquid ibuprofen, though it only comes in children doses so I had to get medical dosing shot glasses to get him enough. I did avoid the bubble gum flavor in favor of mixed berry.

So now we only have pain meds as needed, a liter of IV fluids around noon and his TPN plus IV fluids from 8pm to 8am. Oh, and emptying drains.

Rich's dad went back home this morning. Ian is at Jenna's until 5pm and I am going to try to go to bunco tonight. I just have to hook up his TPN before I go.

There's no place like home

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.

One bowel fluid storm after another

You would not believe the shit ... well, small bowel fluid ... we have been through. This surgery has been a bit like a birth. Even if you have given birth to a child, there is no guarantee that the next birth will be remotely similar. There is a child coming out of the same body, but that's pretty much where things stop being predictable. In this case, we are performing a surgery on the same Rich. He is 18 months older but in overall the same level of fitness. We had planned to have the same surgery, but Rich came to Winston-Salem in much worse shape than he did to Baltimore. In Baltimore, he walked in on his own feet feeling fine. Here he came in shivering and curled up in the fetal position.

Post-op has been equally unique. Rich's incision is not stapled and needs regular dressing changes. He had an infection inside him that affected his overall health. Going through all this again with still no simple answers has affected his mood.

On Saturday around 11am we decided to try a walk. Rich wanted to try using the bathroom after that, so things were looking up. His bowels were waking up and doing well.

But during all that process, there was a lot of fluid. We talked to the nurses and they said that gravity could just be increasing the seepage. When Rich tried a walk Saturday night, though, we had a rush of fluid and had to abort. It took me an hour to clean him up.

By Saturday night Rich was very discouraged. He didn't want to try moving around because invariably it led to unpleasant floodwaters. Because of all this extra fluid, the dressing changes were pretty miserable. He told me, "There's nothing I can do but just lie here and wait for the next horrible thing to be done to me." That is hard for me to work with and I was getting frustrated myself.

We survived the night, or at least most of it. Around 4:30am, I heard Rich call out for me. Kim asked if she should wake me and he said he just wanted to talk if I was awake but she shouldn't wake me. I popped up and told him I was happy to talk. He'd had a nightmare and was worried I was giving up on him. I assured him that while I was frustrated, I was not frustrated with him at all. We were still hoping we could go home Monday or Tuesday, but that was a little overwhelming given the effort it took to change dressings and how difficult it was for him to walk without soaking all of his pads.

By the time we sorted all that out, it was time to change his dressing again. It took over an hour to change everything out and it was full of fluid. Very discouraging and pretty stinky. I finally got everything covered and sealed.

Not long after that, Dr. Hunter (the surgical resident) came in and pulled everything out to investigate. He said that it looked like Rich's small bowel tear was leaking and so we need to go back to no food or water and wait for it to heal. Going back in to repair it would just be more traumatic and it should heal fine on its own. Of course, we find all this out on a Sunday and there are no wound/ostomy nurses here on the weekend, so we are just going through gobs of gauze.

When Dr. Hunter left, things were all topsy turvy. We thought we were going home, and now he can't even get out of bed without effluence everywhere. We all sat there in a bit of shock. Dr. Shen came in a little over an hour later, though, and acted like all this bowel juice was no big deal. He was all, "oh, yeah, we'll just let things chill for a bit, and it should be fine." That was a little reassuring.

Except there was this detail of small bowel fluid everywhere. Just so you know, the stuff in your small bowels does not smell good. It doesn't look good either. And poor Rich was waging a battle against it all day. We tried a medium wound manager but there was fluid leaking out of more than we originally thought. So the day nurse and I tried again with a medium pouch, trimming it to its absolute limits. Needless to say, that also leaked, despite reinforcing it in various areas. The only way to keep him from leaking was if he didn't move at all.

I slept for a couple hours in the afternoon while Rich sat with Jack, frozen in place on his bed. When I came back he tried crossing his legs and it started leaking everywhere again. Many curse words were uttered. Having to sit in your own filth without the ability to escape it is demoralizing, disturbing and disgusting.

But then the heavens opened up. I went to get his night nurse Rakita and told her I needed more supplies and a new pouch to try. She came in and said another nurse on the floor used to be an ostomy nurse and she could help. In walked Lori, with a pile of pouch supplies and a smile. She spent an hour crafting a new pouch for Rich with my help. And by 9:30pm, Rich was finally clean and dry.

When Lori finished everything, I told her she had saved the day. I told her I wanted to hug her, but she was way across the bed and we were both gross. She smiled and said she understood.

I'm happy to report that Rich stayed clean and dry all night, despite our olfactory vigilance trying to find any leaks. Dr. Hunter came back this morning and said we'd try one more day of no food or water, though Rich can have ice chips. No one seems concerned about the leak so long as it's draining. And now that it's draining into a sealed pouch, we can finally stop being so concerned.

Dr. Shen just came in and said we can still go home with the wound manager once we make sure he's staying hydrated and doing well. So there is still hope we'll be home by the weekend.