Thursday, December 12, 2013

Thankful Thursday: Grammy & Steady Improvement

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for time with my Grammy. It's been so wonderful to spend time with my Grammy these last few days. There's nothing better than a chosen friendship that blossoms out of a grandmother-granddaughter relationship. I'm so thankful for the wisdom and joy she's shared with me all these years.

I'm thankful for good sleep. Toddler sleep while traveling can be iffy, but Mckenna has transitioned to the new timezone perfectly and has been sleeping like a rockstar!

I'm thankful for a willing hubby. I'm thankful that Ronnie is always willing to check himself in for a tune-up when he needs it. I know he's healthier for it and I'd kinda like him to be around for awhile…ok…forever ;-)

Ronnie's List:

I'm thankful for FaceTime. Apple sure did figure out a way to make these hospital stays easier. I'm able to see the beautiful faces of my wife and daughter multiple times a day even though we're not in the same area code. Mckenna loves to hug the phone and get kisses from her Daddy, which of course melts my heart every time. 

I'm thankful for steady improvement. So far, I have been able to steadily improve while in the Hole. I've had a couple of days that the improvement wasn't all that big, but it sure beats declining. I really appreciate the patience of my CF team to allow me the time it takes to get better in here!! 

I'm thankful for the IPV. Most people don't like the idea of something blasting air into your lungs, but for me, it's quite the treat when I come into the Hole. It always feels like air is going to places that it hasn't been in a while :) 

What about you? What are you thankful for today?

Wednesday, December 11, 2013

What Brought Me Into The Hole

The last time I was in the Hole for a tune-up was in May. I left after a 25 or so day stay blowing a 73% (with a "baseline" of 75%), but feeling ready to get back to kicking booty. I then had a follow-up appointment about a month later where I blew a 75%. It was at this appointment I set up another clinic visit for roughly 6 months out, on January 6th. I made it my mental goal of trying to stay out of the hospital until then, which would have been a record length of time in-between stays.

Shortly thereafter, I started on an unnamed clinical trial for my specific gene mutation, DDF508.

Since getting out of the Hole in May, I have felt great! My workouts have gone very, very well and I definitely felt more energy throughout the day than I normally do. My mucus seemed very "watery" and I was able to expel it somewhat easily. My breaths were deep and I was moving large amounts of air with each one that I took.

I had very few bumps in the road since getting out in May. A cold here or a sore throat there, but they would last for a day or two at most. I was feeling very good about my January 6th goal.

Things started to change about two weeks before Thanksgiving. I started to slow down. I wasn't feeling bad, just not quite as good as I had before. Still, I was firing at about 90%. I think the biggest factor that led to this slow decline was an injury to my foot. There were days that I wasn't able to put weight on my foot, and therefore, was not able to complete my usual workouts. Not being able to complete my normal workouts is what probably opened the door for CF to outwork me.

You see, I'm convinced that my CF works at the same level, let's just call it level 75, all of the time. It's up to me to work at a level 76 or higher every single day if I want to stay ahead of it. There's no doubt that not being able to complete, or even attempt my workouts, brought me under the 75 level. I know that sounds overly simplified, but you know what, it works for me, so...

Anyway, after a couple of weeks of working below my regular level (mind you that my treatment time didn't decrease, but actually increased in trying to "make-up" for lack of exercise time), I started to feel "off". My coughing increased. My mucus got thicker. My sleep felt interrupted. My energy level decreased. You know, the same old song and dance. I would have 1 good day for every 2 sub-par days. During this time, Mandi and Mckenna were both battling a stomach flu type of thing, so part of me was hoping that my decline was due to fighting their sickness off. If that was the case, I thought, I may be able to make it until January.

That was not the case.

After about 10 days of a slow decline with increased symptoms, I waived the white flag and called in the cavalry. When I finally made it into clinic, I blew a 63%. Not terrible, but not where I need to be. And more important than the number, I wasn't firing on all cylinders and we were all convinced that without intervention, we would continue to watch a slow decline, or quite possibly, a fast one. So, after over 6 months out of the joint, I got booked back in (which by the way, is a longer parole than normal).

It's been 8 full days of antibiotics. After 7 full days, I blew a 69%. I'll take it. It isn't uncommon for me to have no increase or even a slight decrease my first full week. More importantly, I'm feeling better than when I came in, and am looking forward to what this next week brings.

Tuesday, December 10, 2013

Travel Success

Mckenna and I decided to pack our bags for sunny Florida for part of Ronnie's hospital stay this go 'round. At this point in our lives, one of my biggest jobs surrounding Ronnie's CF is to make sure I'm molding Mckenna's perception of his CF, and our "CF life" properly. Some of it will come by just watching and listening to us, while some of it can constructed. I work hard to watch how I phrase things about his stay. We talk about how blessed we are that daddy can go into the hospital; that he has good doctors; that there's medicine that makes him feel better. We talk about all the fun things he may be doing. When she says she misses him, I tell her I miss him too but that I feel so happy that he can be there getting better and we can spend mommy and Mckenna time. We usually end the chat with a fist pound and a cheer for girl time.

Ronnie's last stay I did a lot of fun adventures around town. I decided the best way to have her think hospital stays were a good thing, was to actually make them a good thing…by making them fun for us. You know...see new things, get away with a little bit more, eat ice cream or breakfast for dinner here and there. This time around I decided a vacation to see my Grammy for just the two of us was in order. So, as soon as Ronnie knew it was time, we booked tickets. I had my Grammy in a holding pattern, and let her know we were coming (all of a week in advance, sorry Gram for the short notice!) I decided to fly in and out of Orlando to get a direct flight to make things a little easier, and tack on a short trip to Disney (if Mickey doesn't scream a good time, I don't know what will).

We packed our bags and left yesterday. I knew flying alone with a 2 year old may be the best idea or the worst idea I've ever had. The trip was full of firsts for me. I had never driven myself to an airport and parked; never flown alone with Mckenna; never rented a car with her alone; you name it. I was a little anxious, but I decided I better suck it up and get out of my comfort zone (this whole trip is that way for me). I left extra time because I knew everything would take longer and just decided not to rush things. I knew she'd want to stop and push buttons, look at people, ride the elevator an extra time. And I knew rushing her would only stress me out, and she would continue to go the same pace! HA!

The day went off without a hitch. We had fun. She was busy on the plane, but she napped some, played some, and was rather patient. She did a great job.

We will see how this trip plays out, but it may end up being a blessing for both of us. My goal was to liven up hospital stays and help shape her little thoughts around them in a way that would make future stays easiest on all of us. But it may just end up being a healthy growing opportunity for me in the meantime. I'm a big believer in getting out of your comfort zone, especially for someone like me…a worry wart. So three cheers for another unforeseen blessing of hospital stays!