Measuring progress one cc at a time

It's been a rough week at times, but we are still making progress. Sunday night, Rich left the house. We all went to Sonic for milkshakes and a diet cherry limeade for him. He didn't have to get out of the car, but did leave our property. Monday I took him to Great Clips for a haircut. He didn't get a washing because they don't offer that service, but he has a lot less hair now and looks more like himself and less like a hobo. So that was a success.

Monday night was hard in that Ian didn't fall asleep until after 10pm, I stayed up until midnight so I could disconnect Rich's IV (the beeping scares the dog), and then at 4am Rich's wound pouch leaked. We spent from 4am to 6:45am removing, cleaning, assessing, showering, crafting, measuring, reapplying and recovering. At 7:30am, Ian woke me up with an X-wing in my face asking if he could take it to Jenna's.

You know when you get so tired that you feel drunk? That was my Tuesday and Wednesday. I didn't get a chance to nap because of follow up wound maintenance and work stuff until Wednesday. When my mother called me I had no idea what day/time/planet it was. It's alarming.

Tuesday Rich went to Sonic again. Wednesday he had to get yet another new wound pouch and that put him in a funk. He didn't leave the house but did climb the stairs once. I also got furious with the Sentara nursing staff because they showed up on Tuesday night at 10:30pm to draw labs. I was not happy with them. She came because the labs they drew on Monday had an error but the number they had on file was Rich's cell which is set to silent 99% of the time these days. And woe to the poor woman who called Wednesday morning saying she would be out for Rich's regularly scheduled labs and I told her, "oh, no you're not!" Shenanigans.

Thursday got a little better. Rich went to Zero's with us for dinner and pinball, so that involved exiting the car. But I also got rear-ended on Thursday while trying to find a medical supply store to get more wound pouches for Rich. Thankfully, it was just a bumper mushing and the car drives fine. The lady who hit me was super nice too, so all told it was the best read-ending I could hope for.

But that was the lead up to my coming back to the house without ostomy supplies, hoping the wound nurse would show up with some emergency supplies for us and that Sentara could send someone Friday with new pouches. The Sentara nurse called to tell me no one could make it out until the next day and started in with, "In the future, it would be good if you don't wait until the last minute to request supplies ..."

I did not yell. But wow, did I give her a piece of my mind. We came home on Thursday the 3rd. We did not see a wound nurse with ANY supplies until Wednesday the 9th! That wound nurse said that the largest output she had dealt with personally was 1000cc a day and that person could only get a pouch to last one day at best. We were collecting over 2500cc at the point and I was able to keep a pouch working for at least two days, depending on the circumstances. We have been neglected as far as supplies all along and the wound nurse assured me someone would get me supplies immediately since I used the last of any pouches that would fit on the ever changing wound landscape. So don't chide me about being unprepared or incommunicative about supplies. I am the best wound nurse in Southeastern Virginia at this point. Just bring me my small Hollister brand pouches, more 2" ostomy seals, some foley bag tubing, some medium sized gloves, and leave the sass at the office.

I got my supplies Friday morning. And it's a good thing because when Rich and I tried to go to Tropical Smoothie Cafe for dinner, his pouch leaked as he stepped out of the car. Poor guy just can't catch a break. So we had to clean him up with baby wipes and let him wait in the car while we got dinner so I could take him home and put yet another pouch on him. That pouch has held so far, but I'm checking it every few hours just to be sure.

The fistula is healing because his output has gone down. It's just moving from place to place. The JP drains (one near each hip) are empty today so everything is coming out of the wound pouch. But his large wound at the bottom of his incision is no longer leaking any output. It's all coming out of a circle about 3/8" across. That one little hole, though, is still producing about 1300cc as of yesterday. Much less, but still significant. Setting up the wound pouch each time is like following a moving target. Should we cover the large wound or do we think it's dried up? How much extra wafer should we put in the incision line to prevent leaks? Should I wiggle around and see if I can get the JP drains to collect again? I felt like I was doing well last night that it only took me about an hour to replace the pouch. Needless to day, my back is killing me from leaning over him for that long. I have to wear a head lamp, put my left ear on his dick and then peer up into the wound to assess how it's doing. All part of the job description.

All the medical troubleshooting is not that bad, actually. The hardest part of all this is the emotional toll. No one likes to pull tape off of someone if he looks like it's taking his entire spirit along with it. That said, I was super proud of Rich last night. When his pouch leaked spectacularly as he stepped out of the van, I expected that to send him into a spiral of depression but he was a trooper. He walked in the house, took his shirt off, and casually watched TV while I worked. It was such a relief, at least as much as an emergency pouch change can be.

Today was good. We took a trip to Atlantis Gaming store for the latest D&D starter set and some Star Wars miniature game ships. He hung out in the car with Ian while I went into Home Depot for wall anchors. All told, we were out of the house for about two hours. I have a new policy where he has to cross the threshold of the house and go outside at least once per day. It can be to the end of the driveway or further, but he has to leave the house. So far so good.

This whole update was mostly a brain dump, but I just wanted to get it all logged before I forgot.

Ian has been great through all of this. He just wants to hang out with us, in whatever form that takes. He squeezes onto the twin bed in the office with Rich to watch TV. He brings his Nintendo DS or iPad to the stool next to the bed just to be near Daddy. He could not care less about the tubes. It just goes to show that more adults should take their cues from kids on how to deal with stressful situations.

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.