A Busy Weekend

Saturday, June 14th

I wake up and go downstairs.  I putter around the kitchen, cleaning up after our Boston Market feast.  I make a big pot of oatmeal to share with Steven and the kids.  It is not long before I am tired and want to just sit.

I have been thinking of going to Whole Foods Market, but am now thinking sitting in the car would be nice while someone else goes to the market.

I sit at my computer and look through all the emails that have accumulated during the week.  

It seems like it will be a never ending task to catch up with all the things that have come in. I start looking for things to delete.  

The visiting nurse calls.  She will be by around 1pm and help me change my ostomy bag.  I am dying to take a shower, so I can’t wait for her to arrive.  The nurse at the hospital sent me home with a bag full of goodies we will need to go through.  I lay out things I know we will need;  stoma sizer(1), scissors(2), deodorant (3), no sting barrier film (4), adhesive remover wipes (5), mirror (6) and bag (7). Since I have just come out of the shower, I don't need water and wipes, and I always need to keep the roll of paper towels handy.

The nurse who arrives is named Christina.  Kim will be my regular nurse she tells me, she is just filling in for the day.

We take off the old bag, which was just put on yesterday, and I get to take a shower.  I need to be aware that my stoma, the part of my intestine that is sticking through my  belly, can send out waste at any time.  This is not an action I have any control over any more.  Once out of the shower, I need to keep it covered with a paper towel, just in case.  

We look at my stoma in the full length mirror in my bedroom.  It is dark pink and weird looking.  

We set to work prepping my ostomy bag.  We measure the stoma to see how big it is.  I have a sizing chart I use to do this.  It has circles of different circumferences on it, that I can slip over my stoma. It measures 1.25”.  I need to cut a circle out in the opening of my bag to fit the stoma through. It has to fit just right, not too loose or tightly. If it is too tight, it will hurt the stoma. If it is too loose, stool will get on the skin on my belly and cause an infection.

Once the bag is cut to size, I need to prep the skin on my belly.  The idea is to create a seal that will hold the bag in place for a couple of days, before I need to change it again. The skin prep comes on a little pad, in one of those little packets like you get in a restaurant after you have something sticky.  I have to rub it all around my belly where the bag will go, but try not to get it on the stoma.  It is not hard, but the position is odd.  I prop up some pillows so that I can keep my belly flat, and still see what I am doing.

Once the prep is on, then the bag needs to be placed.  This is tricky because now you have sticky skin, and a sticky bag, and you need to get the placement just right.  The hole needs to go over the stoma without crushing it.  Once that the bag is on, it needs to be pressed so that the heat from your fingers will help the adhesives work.  

All of this seems somewhat simple, except there is so much that can go wrong.  You don’t want your skin to come in prolonged contact with the stool, so you want the seal to be complete. You can’t really see if the seal is complete, because there is a bag in the way.

You want to watch your stoma to see that it is a nice pink color.  Except poop comes out of it, and gets on your bag.  How can you tell if it is discolored?  There are no nerve endings in your stoma, so you can’t really tell if something it is having trouble until you see it.  How do you know when something is wrong?

I ask the nurse all these questions, and she gives me answers.  I have booklets that explain how all this works, but it is so much to take in.  One more thing she wants to go over is bathroom maintenance. She tells me that whenever I empty my ostomy bag, which may be two or three times a day, I must clean anything I have come in contact with.  Clean the toilet bowl, the surrounding area and the sink.  Everything should be wiped down with clorox wipes before I am done.  Great, I’ll have that sparkling clean bathroom I always wanted.

Before she leaves she asks me my plans for the day.  I tell her about Whole Foods, and she quickly nixes that idea.  “Listen,” she says, “you have just had major invasive surgery on your body.  You need to rest.  You shouldn’t be walking around Whole Foods.  Think of something less strenuous, like just a car ride.”  I suggest Del’s.  “That’s more like it,” she says.

by Alex

After Del’s, Kaileigh, Alex and I go for a walk to the top of my street.  We decide that is far enough and walk back home.  I never would have made it through Whole Foods.

I decided to do some watercolor painting at the dining room table.  I really want to get that picture done for Natasha I had started in the hospital.   Kaileigh started painting a fox, a colorful little guy leaping across the page.  Alex has decided to join us as well, making some flowers and trying out the medium.

While we are painting, my brother in law Brian stops by on his way to work to drop off a chicken dish he has made us for dinner.  He and Renee, his wife, are amazing cooks, and we are excited to have delicious food.

by Kaileigh

Tangie, Adam, Dave and Dan stop by for a visit.  We sit and draw, paint and talk for a while before they leave.  Kaileigh adds more foxes to her painting, and it reminds me of something my grandparents used to have hanging in their home.  I really love what she is doing.  

While we are seated around the table, I can see my sister Sara outside.  She is pulling up the grass between the sidewalk and the street.  She is preparing the beds for the zinnia garden that I didn’t get to plant last week.  I have an amazing sister.

Ayla and Chauncey stop by, and we have the chicken that Brian has brought over.  It is awesomely delicious.  It is moist and crispy and has a delicious sauce that goes over the whole thing.  There is also enough to feed a small army.

by Alex

It gets late, and I need to go to bed.  Kaileigh has realized that most of my clothes will not work with my new bag, and decides to go to Target to remedy this situation. She and Alex go off to shopping, while I go off to bed.

Sunday, June 15th, Father’s Day

I lay in bed and think about my possibilities for the day.  It is Sunday, so there is church. There is also gardening, something I am woefully behind on.  I don’t act on either of these things, instead I just lay there and think about them.

I finally go down to the kitchen.  It gets a lot of use, between our regular lives and my daycare.  Everyone has their own style of cleaning, and their own focus.  I haven’t been in my kitchen for a week, and I want to get into the nooks and crannies.  It seems silly, but after a week in the hospital, sitting around doing nothing, I just want to do something normal.  Cleaning the kitchen is the most normal thing I can think of.  I last much longer than yesterday, going slow and listening to NPR to help me along.

by Tangie

By the time I am done, it is lunchtime, so we heat up the leftover chicken from dinner last night and enjoy it once again.  Josh returned from from Ithaca last night and his brother has stopped by to visit, so they join us for lunch.

I go upstairs to get dressed, and find the clothes that Kaileigh found for me at Target.  She got some yoga pants with a nice soft waist and a flowy peach colored dress with a high waist.  Everything fits nicely and hides my ostomy bag.

More visitors stop by. Steven’s mother and Ed arrive, bringing a huge fruit basket with them. Helen tells me she just needs to see me to make sure I am doing okay.  While we are sitting and talking, my friend Julie stops in too.  She is in from Colarado, and has just picked up the car her family needs for their camping trip in Massachusetts this week.  Since she was over near the mall, she decided to pick up some clothes for me.  There are three dresses, all with high waists and wild designs on them.  I am so appreciative of them, but a little skeptical.  The designs seem so wild for me, I am not sure if I can wear them.

Julie, Josh and David pack their mini van with all their camping gear and are off for a week of camping.  We give hugs all around before they go.  Kaileigh drive up on Tuesday to join them.

by Dave

Kaileigh and Alex take me out for another walk.  This time we manage to go all the way around the block.  Walking up the hill I live on is more difficult than I expect. About halfway up, there is a house that has been sold in the week I was in the hospital. The new neighbor is out in her garden trying to identify the weeds from the plants.  I introduce myself and my kids, and start to point out the weeds.  She hasn’t moved in yet, but I tell her I will return when she does to help with her garden.  I am to take a break to talk with her, it is much easier to make it up the hill.

I am getting tired, and take a nap.  It is Father’s day, and we want to take Steve out to Texas Roadhouse for ribs. It is his favorite dinner. I want to be awake enough to enjoy our outing.  Kaileigh, Ayla and Alex come, along with my sister Sara.  We can’t convince my Dad to join us. I order a small steak, with a salad and mashed potatoes. I manage to eat the whole thing.

The next part of the plan is to take Steve to see the new Tom Cruise movie.  I am feeling tired, and need to go home, so they drop me off before they go. When I get into the house, it seems that everyone in my neighborhood, in every direction, is grilling for Father’s Day.  I know that I have just come from a steak house, but the smell is so overpowering and inescapable, it makes me feel nauseous.  I grab the spray that Amy sent me in the hospital and drift off to sleep to the scent of roses.