Tricks of the Trade

Well, the feet are still swollen but are somewhat better at least. He can now put on shoes when he first gets up for the day. Hurray! The trick is to leave the shoes on in the house so that he doesn’t have to worry about getting them back on his feet.

Antibiotics are almost done (thank god). So far, no fever in the last week. Here’s hoping they stay away this time.

Night John boy.

K & J

PICC Fixed

PICC line repair went well. One of the two lines isn’t usable at the moment, but all he needs is one, so we are fine with that. The main thing is that bacteria won’t be able to sneak through the crack anymore.

The blood cultures are still pointing to GI (likely liver) stuff going on; hence the fevers. The good thing is he’s already been on the antibiotics since Friday, so we’re ahead of the game.

Ankles, feet, and legs are still swollen to beat hell. Luckily fingers aren’t, so we can cross them and hope that the new med starts working soon.

K & J

Big Yellow Monster

This week has been a busy one. All of our junk was hauled out of our cupboards for purging and we painted our kitchen. And when I say we, I mean me and my dad. The swelling in Joey’s legs/feet greatly impeded his ability to help. If you want to get technical, not only did they impede his ability to help, but they necessitated him spending almost the entire week with them propped up with pillows to try and drain the fluid out. Nothing like lying on the couch with your feet up all week while your wife and in-laws are moving furniture and painting to make you feel like a lazy SOB. The only way it could have been worse was if he was sipping on a mai thai.

In fact, this week we made an important discovery. Although cankles might be adorable on babies:

the cuteness of this phenomenon does not carry over to 33 year old men. Especially when your feet typically look something like this:

And they end up looking like this:

Or this

if you try to put shoes on. Note: none of these are pictures of Joey’s feet. You’re welcome.

Long story short, he started a new medication last night. Hopefully that will make a difference and reduce the swelling.

But the fun didn’t stop with painting and cankles. We also got to pass some time in emerg yesterday. One of the tubes on Joey’s PICC line finally cracked, so when we tried to put the medicine in, it just ended up squirting out all over the site dressing on his arm. At least it lasted until now. Conveniently, he also had a fever when we went in, so they were able to take blood cultures to try and pin down why he’s been getting fevers every 2-5 days for the last month. So far it looks like it’s liver related (surprise, surprise), but some of the other cultures take more time to grow, so we are still waiting for the final verdict on that. Hopefully we’ll find out next week when we go back in to have his PICC line repaired or replaced. In the meantime, he’s back on antibiotics. Woo-freaking-hoo. We are happy that he can take these orally and that he didn’t need to stay in hospital. The patch job for the PICC line was a dressing change until it can be fixed up next week.

Sidebar: PICC line dressing changes are a sterile procedure, which basically means that nurses’ usually end up wearing a yellow gown that looks like this:

When the lovely nurse (who Joey has had on several occasions before), brought in the stuff to change the dressing, she made the mistake of referring to herself as the “Big Yellow Monster”, quite jokingly, I assure you, I asked whether she was talking about herself or Joey and told her not to make fun of him for being jaundiced. She looked horrified and apologized profusely until I finally told her that I was just bugging her, I was the one who made the joke, and that there was no need for her to apologize for me being an asshole. It appears that my sense of humor has reached a new low.

But hey, you’ve got to do something to pass the time, right?

K & J

Rockin’ Good Time

We had a rockin’ good time at the sock hop on Saturday. Thanks to everyone who supported the event and to our gracious hosts, Victoria and Brandon.

We are particularly happy that Joey was able to attend; it’s always dicey about whether or not he will feel good enough to follow through on the plans we make, so that was a huge bonus. He is definitely paying for being vertical now though – you would not believe the girth of his cankles. His feet/legs are extremely swollen and look very painful. Will be contacting one of the many medical professionals involved in his life to see if they have any ideas about how to deal with this.

In the meantime, I will leave you with some documentation of the fun:

Sock Hop

Example of what I mean when I say that we are amazed by the kindness of the people we are lucky enough to have in our lives: enter sock hop. Our friends, Victoria Redlon and Brandon Nesbitt have been working their butts off organizing a 50’s style dance that will take place this Saturday, in their home (good thing they have plenty of space!) Businesses and individuals throughout the community have come together and donated prizes and supplies to help make this event a success.

Joey and I think it is very freaking cool that people still care this much about what happens to us after all of the ups and downs over the years. Frankly, I am stumped for words to express our gratitude.

If you are interested in attending, or donating a prize to the event, please contact Victoria Redlon, or Brandon Nesbitt (the event organizers), or Joey and I at: . Victoria has created an event on facebook, so if you want to share this with other people who you think might want to attend, add Victoria Jeanne Redlon as a friend, find the event, and click share so your contacts can see. The party starts on Saturday, November 13th at 7:00. There will be lots of great prizes and a silent auction. Dressing up 50’s style is encouraged, but not necessary. I am, however, aiming to get as many hilarious photos as I can.

Because after all, what’s a theme party without some embarrassing photos that are posted on the internet afterwards?

K & J

Puppies, Ice Cream, and Structurally Unsound, But Perfectly Decorated Black Forrest Cakes

Another one of those things that it seems people are curious about is how we cope. Hmmm…good question. The short/boring answer is that somehow you just do and play with the hand you are dealt. Here’s a somewhat more involved answer. See if you can guess which one is Joey and which one is me. Note: there will be no prizes for correctness. Only the warm fuzzy feeling that comes with intellectual superiority.

  • Getting out and doing fun stuff when Joey can. Seizing the moment!
  • Forcing Joey to get out and do fun stuff when he can. Exploiting his good nature by exerting only the kind of pressure that a grumpy spouse can exert to rope their loved one into an activity in which they have absolutely no interest in partaking.
  • Staying in and visiting with friends. Let’s hear it for people coming to him!
  • Exercising. (That one’s a freebie).
  • Letting ourselves be sad when we are sad.
  • Letting ourselves be scared when we are scared.
  • Laughing when we are happy. Or when we’re sad. Or angry. Or at times when it’s really inappropriate. We use this one a lot.
  • Talking when we need to talk.
  • Burying our heads in the sand and trying to forget about things when we can.
  • Letting each other and the people close to us know that we love them and appreciate them.
  • Watching obscure TV shows.
  • Having an “angry nap” or a “sleepy nap”.
  • Journaling.
  • Reading.
  • Making jewelry (another freebie: this one is predominantly me, but you would be surprised at times. What can I say? The man makes a mean bracelet!)
  • Texting our good nights when he is in hospital.
  • Looking at pictures of Kimberly and Mike’s dog. (Does that make this a blog about puppies? LOL).

  • Reading funny mail.
  • Standing in awe of April’s cake decorating abilities. We can hardly wait for class to be in session again!

Who says she doesn’t take direction well?

  • Two words: sour keys.
  • Eating vast quantities of chocolate chip mint ice cream.

That’s right, I use food as a crutch.

  • Being amazed at the kindness of the people we are lucky enough to have in our lives.

K & J

A Day in the Life

It has been pointed out to me recently that I’ve been a bit slack with updating the website. There are a few reasons behind this: mostly because things aren’t going well and haven’t been for some time. Another key reason is that I don’t like to make the people we care about feel bad when they read the blog. I know this will happen when I deliver ho-hum news. Finally, I am tired. Tired of Joey not feeling well, tired of our lives being on hold, tired of not being able to be at work, tired of needing to ask for help, tired of not being able to have casual conversations about what we are doing now without it turning into a more miserable and in-depth talk than we want to have. I am talked out and I know Joey feels the same about things as I do. In short, we are tired of not being able to be “normal”.

The last time he was in hospital, when we went to Circle K, we bumped into a friend of his whom he hadn’t seen in a couple of years. When he asked Joey how he was doing, Joey said: “Good”. I could see the skeptical look on his friend’s face as he followed up with a couple of “Really?”s. Joey maintained his stance. This is in spite of the fact that he looked even more jaundiced under the gas station lights and that he had a hospital band on his left wrist. “Good”. I think our standards are different than most peoples’.

The funny thing is that he wasn’t lying; it actually was a good day. We were happy he was out of the hospital for a few minutes and that we could do a simple errand together. Our “good” is a day when he feels less bad. Joey spends the majority of a typical day asleep. When he is awake, I am trying to figure out what I can feed him that he won’t throw up (he has a fairly persistent problem with nausea), cramming pills down his throat, pressuring him to do his sinus rinses, keeping tabs on his breathing tests, encouraging him to do whatever exercise he can to try and get him in the best possible shape for his surgery, among other things. In short, our lives right now are ruled by Cystic Fibrosis and its complications. Even something as simple as going into town to visit our friends is a challenge.

My intent with this post is not to make people sad, but to hopefully paint a clearer picture of what we go through on a typical day. I find that I tend to focus a lot on the positives when I write. Again, the intent is not to be deceptive, but rather, to keep us and the people around us in a positive frame of mind. We need to think this way if we are going to get through this. That’s the reason why, when I wrote about our trip to Victoria, I focused on the fact that we were able to make it to my sister’s grad, got to meet Chrissy and Trav’s new baby, and were able to visit with at least some of our friends. If I didn’t, the post would have focused on the downer stuff: we didn’t get to see everyone we wanted to, Joey screwed up his back two days into the trip and spent the next two days laying on the couch, we dealt with nausea, vomiting, and a mysterious high fever that keeps coming and going for some unknown reason. That kind of stuff is a typical day, so if we focused on that and not the things he is able to do, we’d be uniformly miserable. The reality of the situation is that things do not stand a chance of improving until after Joey gets his liver transplant. If he gets it at all.

We’re sorry that you will be upset when you read this. Like I said, it is nothing new and we are coping, as we always do. The big things that other people think are little bring us huge rays of sunshine: the fact that Joey is able to be at home right now and is not in the hospital, the fact that at this moment, by his standards, he is not feeling too horrible, and the fact that we are lucky enough to have an ever-expanding, kick ass network of really supportive people surrounding us.

Who could be depressed by that?

K & J