2016 Great Strides Walk!

Saturday, May 7, 2016
The 2016 Great Strides Walk in Jacksonville is over and we are so glad we went. The Jacksonville walk is probably the smallest walk we've been a part of, but it was really enjoyable.

Great Strides was held at the University of North Florida campus and let me tell you, it's just beautiful. Definitely makes me want to retire and go back to school! I'll probably never do it, but I'd like to do it anyway.

Team Sam was joined this year by two of my shipmates from the USS Hue City. BM3 Melynn Cobaugh and FC2 Jonathan McDonald, joined by their significant others, brought their experiences with CF to our team. My sincere hope is that we are forming the bonds of teamwork that will be amazing next year. Our ship won't be in Jacksonville for next year's walk, so we'll have to get creative, but we've done some cool things before.

Here's the 2016 Team Sam pictures!

I took a few selfie pics of the entire team. As you can tell, I had no real idea what I was doing.

Sam had already run ahead of us on these next few pictures, but we found her sign!

We always love seeing some of the cool t-shirts that teams wear. Here are a few I liked in particular:

We could always use your financial support for our Cystic Fibrosis Team. Please consider donating by clicking this link.

Here's to 2017!

Subaru Fall Classic Half Marathon Report

Tuesday, December 2, 2014
I run long distances for several reasons. For starters, it's something not everyone can or would want to do, so that allows me to be unique. Secondly, it's a way to at least combat my weight issues (which are legion on some days). Third, it hopefully lays a foundation for Samantha learning how to use running and other activities to help her health. That one really goes for all of our kids. Finally, it's a two hour opportunity for me to be a running billboard for the fight against cystic fibrosis.

I haven't run a half marathon in four years. Aside from the Fort2Base, a 10 nautical mile race, I haven't really run anything competitive since 2012. I decided that this year was my year back. I trained (mostly) well and was (fairly) ready for the race. All I wanted to do was beat my 2010 personal best of 2 hours, 6 minutes, 33 seconds, which I ran at the Carlsbad Half Marathon. A side goal was to finish in under 2 hours.

Unfortunately, I made just about every rookie mistake out there. It was like I had never run a half marathon before! I ate the wrong food before the race, I stopped training consistently a few weeks before the race, I started out too fast, I didn't manage water intake very well, and a whole host of others! I was a mess.

Speaking of going out too fast, I was feeling really good those first several miles, so instead of just settling into a pace that was comfortable, I ran with my senior chief, a fellow who is naturally a far better runner than I am. Still, I enjoyed the competitive nature of our run. We ran in a group of four (all from my ship) and made a good game of passing people from mile 2-ish to around mile 8. We ran those miles in under 9 minutes each. That was WAY too fast. I hit a wall around mile ten and had to literally claw my way to the finish line.

As for the race itself, I enjoyed the scenery very much. We ran through several residential areas, so we didn't have to worry about traffic. In many ways, it was a nice, quiet race. Unfortunately, it also wasn't all that well attended, so the limited people out watching and cheering for us probably had an impact. The miles were marked very well until mile ten. Sometime after mile nine, I saw a marker with the number 1 on it. Well, I made the assumption that they didn't have a "10" marker and were starting over with 1. They weren't, and I expended a lot of energy thinking I was further along than I really was. Sure enough, just before mile 12 there was a 2 and so on. I was really frustrated by that part. I figured out later that they merged their shorter race in with the half marathon toward the end. Had I done better research before starting, I would have known that. Again, I was making rookie mistakes. Anyway, it was a nice course with not too many turns and it was mostly flat. That was vital to me not dying. I remember the La Jolla half marathon for its massive hills.

Overall, it was a good race on a good course and a fantastic time. My overall run time on the course was 2 hours, 1 minute, and 20 seconds. I beat my best previous time by over five minutes! My best mile was #4 (8:44 pace) and my worst was the first one (9:42). Granted, on that first mile, I was dealing with a lot of people, so it was to be expected. I placed 85th out of 158 runners in my age group (35-39) and 565th overall out of 2112 finishers. 

This race also gave me a chance to see some of my pacing. Toward the end, when I was running on will power alone (from starting out too fast), I tried to keep my gait and stride correct, but I knew I was having trouble. The below pictures show that I was pointing too much with my toe and landing too much onto the heel. I've worked hard to become more of a mid-striker, but clearly I have some more work to do. 

Most important though was the camaraderie I had while running this race. USS Hue City had several runners in this race. I really enjoyed planning the race, running with several members of the crew at different points, and the before and after photos.

Grateful on the last day of November

Sunday, November 30, 2014
I love Christmas season. I’m currently basking in the warm glow of our family Christmas tree on November 30th. The cat is playing around the base of the tree and ventures up the middle every now and again (we really have to stop that from happening). We haven’t put any gifts under the tree yet, even though we’ve bought a few already. I’ve got a cup of coffee on my side table next to me. It’s Millstone brand breakfast blend. Life is good.

This has been such a year of change for us, even outside of cystic fibrosis. Samantha has been mostly healthy here in Jacksonville, FL, where we now live after my Navy transfer in July. She’s settled into school and has a ton of friends. Timothy too has found that he’s adjusting back to life at school after four years of homeschooling. He’s been over to some friends’ house (they are twins) and we’ve had them over once as well. The kids are really enjoying life for the most part. Hannah has just learned how to play games on our iPhones. Life has ended for us on that note. But if that’s the worst we can drum up, I suppose we’re ok.

The point is, life doesn’t revolve around cystic fibrosis for us (or Hannah’s peanut allergy or Tim’s Asperger’s). Life revolves around our family, faith, friendships, and a bunch of other things. It’s what makes us “us” as a unit.

When I wrote this draft in my head, I wanted to say that we shouldn’t take cystic fibrosis too seriously, but that would be wrong. We do take it seriously. It is real and it’s landed our daughter in the hospital several times. Our boy with Asperger’s has a constant struggle with reality. Our baby has to be protected from peanuts for crying out loud! So yes, we take these things seriously, but they do not define us.

Instead, we are defined by who we are, not by what we have. I am grateful for that as I enter the last month of 2014. God is good.

Adjusting to a new Climate

Monday, September 1, 2014
Alicia and I were talking this morning about what success would look like this week. Alicia mused that, "I'd be happy if we could just keep both kids in school and not home sick this week!" Clearly our standards aren't too high! LOL! But seriously, our kids are obviously still trying to adjust to the different climate in Florida.

In fact, we all are. I'm trying to train for a half marathon and running in this weather is a real challenge. Alicia has been sick as well and our kids have just been drained at times in the day. I've never experienced this level of humidity with this kind of heat...at least not since visiting places like Singapore and Hong Kong, which are nearer the equator and tropics. Florida is a different beast for sure.

We left Great Lakes Navy Base thankful that that climate (desperate cold and high pollen count) were over and yet we're learning, as we always do, that each climate has its own blessings and challenges.

I guess the important thing to remember is to enjoy where you live and understand that the grass isn't always greener on the other side...it's just a different kind of grass, that's all.

How do you deal with moves and cystic fibrosis? Thoughts?

Hospital Stay #3 Day 2

Wednesday, June 25, 2014
Movers will be here any moment, so I don't have too long to write, but I wanted to update friends and family members so you can know how Sam is doing. I also want to lay out a few frustrations so you can know how to pray for me (or tell me to calm down and get over it).

We finally got the PICC line in her around 12:30pm yesterday. As Sam was not actually scheduled for any procedures (because she was essentially an emergency admission), we had to wait for a slot. This is a minor frustration, except that there is almost zero communication between the staff and the parents when it comes to something like this. I can't imagine that it would be too hard to say, "I'm sorry, Mr. Smith, but we're probably going to be waiting until nearly noon or so before we can start the procedure." Then I could say to Sam, "Hey baby-girl, we're going to have to wait awhile, but we'll get in there around lunch time and then I can order you some food so you can eat as soon as you're done."

Instead...crickets. Very frustrating.

I also asked about how long the antibiotic regimen was going to be this round (we've done 7 days before and 10 days). I let the resident know that it was vital to have good communication as I am less than 2 weeks from HAVING to report to my ship.


I love the doctors and especially the nurses at Children's in Milwaukee, but I was so close at a few points yesterday to going crazy with the lack of communication. I'm not asking for her to get better tomorrow, I just want to have an idea of what you're doing, how long you expect it to take, and any contingencies.

Maybe it's the military man in me. Give me a plan and a backup plan. If it doesn't work, we'll look into plan C. This isn't hard. Communication is the key.

Some more experienced members of the CF parenting community may not understand why I'm going out of my mind, but I can't be the only one.

On a good note, Sam's appetite is getting better, as evidenced by the picture below.
Yes, it's unhealthy...but when one is in the hospital, one does not judge the food choices of someone else.

She is also frustrated, but mostly because the PICC line is not comfortable. I rewrapped the ace bandage around it (she has to have a bandage because it freaks her out to see the gauze), but it still bothers her. And she still has the IV in her for a reason I couldn't ascertain. I'm sure Alicia will get to the bottom of it.

Yes, it's a fact, I've been frustrated by this experience. This is our third hospital stay and it seems like we learn less each time we go in. I hate this disease because it doesn't make sense, but I also hate the near complete lack of communication. Alicia is better at getting information than I am, so hopefully she'll have more soon.

Back in the Hospital

Tuesday, June 24, 2014
Sam Waiting semi-patiently for her PICC line
I forgot to post about Sam being discharged from the hospital back in March, so this post looks a little funny if you don't know the background. She hasn't been in the hospital since March, when the last post was written. I just got so excited posting pictures on Facebook about her release last time that I forgot to make a blog post about it. 

Sam was starting to get sick again this last weekend. We're talking June 21st or so, a mere 3 months after the last exacerbation. Further complicating the issue was that packers and movers were due to arrive on Monday the 23rd. We really couldn't afford to split up with one of us managing children at the house with the packers and the other maneuvering the hospital situation with Sam. Yet we also knew what had to be done. Sam wasn't well and we were about to move away from a good hospital into the unknown.

Alicia called the CF clinic and after trading messages with the doctor, decided to take Sam up to the hospital for a pulmonary function test. I just knew this was going to equal a hospital stay, so I sent Alicia with the vest, which is how Sam does her treatments. If she were to be admitted, they would want Sam to use her own machine.

Sam's baseline is 101%, meaning that her lungs essentially have more capacity than they need, as the respiratory therapist explained to me. You and I, those of us without smoke-filled lungs that is, also have more than we need. Unfortunately, her tests on the 23rd showed her to be only getting 67%...not good.

I knew as soon as Alicia told me that information that we were being admitted, and the doctor confirmed our suspicion within an hour or so. Alicia stayed up there most of the night, then came home around midnight to be with the packers today (the 24th) and the movers tomorrow (25th). I'll be up here in Milwaukee for at least those two days.

We're waiting on the PICC line to be put in now. I had hoped that it would be in by now, but Sam is on the waiting list instead of actually scheduled, so it could be hours still. Unfortunately, she hasn't been able to eat either, so she's not going to be happy much longer. They need to hurry. 

Numbers don't Lie

Friday, March 28, 2014
Alicia and I were very confident going into yesterday's PFTs (Pulmonary Function Test). Samantha has been very literally bouncing off of the walls for the last few days and her oxygen saturation numbers have been at her baseline (95 or above) during the same time. The only thing we needed to have bounce back were the disappointing PFT numbers, which were at 80 on Monday, a saddening 20 points below her norm (100).

She's been doing so well we thought she was on the mend. In addition to getting an antibiotic via IV (or PICC line after Wednesday), she was also getting four breathing treatments daily (double the norm). Suffice to say, we thought the numbers were going to be fantastic yesterday.

As Alicia pointed out in her post, the PFTs did not go as we expected. I may have been a little more reserved than Alicia (I thought she'd make back half of what she lost-to the low 90s). Alicia thought she'd be close to baseline. Why did we think that? Because our daughter is climbing on things acting like a wild animal!

All it means is that there is still more healing to do. Numbers do not lie. It's disappointing because, as Alicia also pointed out, the hospital here only does the PFT testing twice a week. Our next test will be on Monday.

If the doctors talk about this issue on their morning rounds today then I'll update this post. Until then, it's more antibiotics and treatments!

Mom's Intuition?

Thursday, March 27, 2014
I need to start finding out how other hospitals work, but CFers at our hospital only do PFTs on Monday and Thursday.  This can be such a bummer because if you don't hit that magical #, you know you're here for another 3 or 4 days before you can even test again!  Well, Monday's pfts (see last post) revealed we would be here for a while, but Sam is doing SO well we were hopeful to see a leap!  In fact, I was so bold as to "predict" this morning to Dan that she would hit the 90s, possibly upper 90s.

My mom's intuition was WRONG!  Hasn't been the first time and won't be the last, I guess.  I'm very grateful Sam's not dependent on the accuracy of my intuition!

I requested no cyproheptadine this morning so there would be no chance of sleepiness because of medicine.  She was alert and happy, listening to everything the RT told her to do.  She was giving all of her effort to the PFT, a test that is fairly complicated.  Everything was set to give her the best odds possible.  

And yet the highest FEV1 that her lungs would produce was 81.  It's so discouraging!  That's only 1 point up from Monday, which had an after-albuterol score of 80.  I asked the resident if we need to 1) change to a stronger antibiotic or 2) add steroids.  I expect to get the answers to those questions tomorrow morning at rounds.  

Diagnosis Day PT II: PFTs

Wednesday, March 26, 2014
Last May when we were admitted, Dan and I swapped almost every other night and that brought great comfort to Sam so we’re doing that again for the most part. Due to the timing of day commitments as the week goes on, it made the most sense for Dan to stay the first night. I arrived around 11:30 or so this morning and they had moved her pft time up to 12:45 from 1:40. Earlier the better to me!

She had energy until it was time to go pfts and then she was exhausted again, falling asleep in the wheelchair down to pulmonary. I know she’s sick, but I believe the true culprit of this is her cyproheptadine, a medicine we have a love/hate relationship with because it helps increase her appetite, but makes her very tired AND emotional. Not the place to be when doing pfts!

I think the pfts were probably pretty accurate, but unfortunately it’s hard to know because if she wasn’t yawning, she was tearing up because we wanted her to blow strongly another time. Three weeks ago her pfts were 100, today they were 78. That’s not good. They gave her an albuterol treatment to see if there would be any change, and the best # we could get was 80. They will have to at least hit 90 to be released, so we’re getting comfortable. We haven’t heard from the doctors since the pfts, but we expect to be here at least for a week.

Hopefully we’ll know more tomorrow.

Diagnosis Day

Tuesday, March 25, 2014
The title of this post is a little bit of a misnomer. The fact is that it was about 36 hours or so before we were told everything about Samantha’s situation. Most of that process was due to the need to do PFTs (Pulmonary Function Test), something that Alicia will talk about in the next post.

Since this was the first time we had been admitted to a hospital via an emergency room visit, I didn’t know exactly what to expect. However, what I did expect was for the hospital to treat it like the emergency they were claiming. Instead, I got…well…nearly 36 hours worth of delays. We went the entire first night there without talking to an actual pulmonary doctor. The resident was a sweet young woman who talked with confidence, but she knew her limitations. The respiratory therapist was a good guy, but knew no more than I did about cystic fibrosis.

In short, that night stunk. I won’t revisit it for you. You can read about it HERE if you haven’t already.

Needless to say, we were anxious for an answer. The only thing we knew from the ER in Lake Forest was that they wanted to find out if it was a virus causing CF-exacerbation-like symptoms, or if it was an actual exacerbation.

My initial understanding was that hospitals want to find this sort of thing out quickly. My experience has taught me otherwise.  We waited until somewhere around 9:00am to even talk to the day resident about what she thought and the attending doctor didn’t come around until about a half hour to 45 minutes later. It wasn’t until 10:30am that we learned what they thought…over 12 hours since admitting Sam.

The attending was wonderful. He was a very well-spoken gentleman who clearly had the respect of his residents and other staff. He included me in the rounds and included Sam in the process as well.

When he brought me out to the meeting for rounds, he turned things over to one of the residents, but kept very close charge on everything. He would gently correct her if she was saying something wrong, and encourage her when she was presenting her diagnosis.

When I first heard the word exacerbation, I had to make sure I was hearing things right. It just couldn’t be! Our daughter had been so much sicker the year prior. This just didn’t make sense to me. Despite a rough night, I figured we needed 1 or 2 days in the hospital and we’d be sent home.

Hopes were quickly dashed. While they thought it was probably an URI (Upper Respiratory Infection) that caused the exacerbation, they did feel pretty strongly that it really was a CF exacerbation, which meant a 10-14 day tune-up. This was discouraging, to say the least. I kept trying to ask questions that would lead back to a shorter timeframe for treatment, but I kept hearing the same thing.

Then the attending talked about the PFTs that wouldn’t even happen until later that afternoon! Ugh. When I think about getting something done, I don’t think about putting it off until later. Alas, I had to be patient.

There was one place where I put my foot down though, and countered the medical team. Samantha had just had a full glucose screen on the 3rd of March, yet the team wanted her checked for blood sugar levels before every meal a scant three weeks after that full screen. Alicia and I felt this was uncalled for, though the nurse said that it was standard practice.

“I’d like to ask a question here,” I said.

“Sure,” the attending said. “Go ahead.”

I explained the recent glucose screening, including the results so they would know I knew what I was talking about, and then said, “I would really like to avoid pricking her on top of everything else we’re doing when it’s pretty clear that she doesn’t have CFRD (cystic fibrosis-related diabetes).

The residents looked at the attending…I looked at the attending.

“I agree,” said the attending. “Dad’s right. Let’s forget about the blood sugar levels.”

I felt good about that decision. After the last hospitalization in May of last year, where I had been so frustrated at times with the staff, yet quiet about it, I felt like I needed to be more vocal this time. Thanks to that talk, Sam hasn’t had to have an extra procedure.

Of course, this was only the first step in the diagnosis. While they believed it was an exacerbation, only the PFTs would tell us how much trouble she was in. Alicia had arrived to relieve me by the time Sam was getting ready for PFTs, so I’ll let her tell the rest of the story of her diagnosis. Check back tomorrow for the rest of the story of diagnosis day!