2016 Great Strides Walk!

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

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

I love Christmas season. I’m currently basking in the warm glow of our family Christmas tree on November 30^th. 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

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

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.

Crickets.

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

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

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?

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

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

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 3^rd 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!

Sleepless in Milwaukee, PT II

I realize that I'm writing now not so much to report to the greater CF community about what's going on as I am to make sure I report everything that happens to Alicia without (a) calling her in the middle of the night and (b) not forgetting anything.

Since I went back to sleep around 2:00am, Sam has had her second antibiotic dose. That was around 3:30am. Periodically before that her O2 saturation monitor would go off and the nurse would come in. At each time, she'd up the amount of oxygen coming to Samantha, or have her cough, or reposition her, or a combination of the above. Sometime around 3:00am, she had the Respiratory Therapist (RT) come in. He's a likeable guy. A little odd. I find that most of them are. He noticed a little issue with her right lung, but not serious yet.

Anyway, by 4:00am the antibiotics were done, but the beeping was getting more consistent. It seemed that we couldn't get her into the mid-90s. In fact, by 4:15 or so, we couldn't get her into the low-90s!

Around that time, the nurse decided to switch her to the cannula (O2 hose that sits in the nose). I talked Sam through it and after a few minutes, she was sleeping again. But no change. Even with 3.5 litres of oxygen, her saturation was below 90. Doctor called, and at 5:00am, the doctor called for the RT. The nurse lowered her oxygen to 3 liters because it was uncomfortable for Sam and clearly wasn't making much of a difference.

It's been a long night.

Sleepless in Milwaukee

The Bottom Line Up Front is that Samantha is back in the hospital. The real reason I'm writing this post is a bit more lengthy to explain. Bear with me.

Sam has been getting a little sicker over the last several days, and finally Alicia and I decided that we needed to get her seen. Honestly, I just assumed the ER staff would do a breathing treatment, see her O2 saturation stats come back to the mid to upper 90s and send us on our way. That's what happened last year anyway.

I was wrong. While the saturation did come back up periodically, the hospital had no more luck getting her stable above 95% than we did at home. After consulting with the on-call doctor at Children's of Wisconsin, where Samantha is treated for her cystic fibrosis (CF), it was decided to transport her from Lake Forest, IL to Milwaukee, WI. Because of our schedules for the week, I chose to bring Sam up to Milwaukee and get her settled in for the night.

After getting her settled in, getting a breathing treatment out of the way, and finishing up her first antibiotic drip (Unasyn), Samantha and I were basically shot. Both of us curled up in our beds and fell fast asleep. This was around 11:00pm.

And then the infernal beeping! it started around 11:20pm. As she slept, her O2 saturation dipped under 90, coming to rest at around 87-88%: Way too low! In came the nurse to start an oxygen mask at 1 litre. That's the lowest dose I think they can do.

The next nurse on duty came in at about midnight to do her rounds. I don't like sleeping while someone pokes and prods my child, so I got up and observed. We talked about the overall situation and in particular, the fact that she was only at 91% saturation even with oxygen. This was still true at 1:15am. At some point, I assume they will increase the oxygen flow.

But that doesn't explain why I'm awake. Here we are, on the cusp of hospital stay #2, and I will be a (small) part of deciding if our daughter is admitted for a tuneup tomorrow, and I can't sleep. I need to sleep. I need to be alert tomorrow.

I keep going back to the fact that I thought she wasn't going to get admitted to the hospital. I still don't know that they had to admit her, but I can't deny the 91 that is screaming at me from the monitor. It's not crazy low...but it's not acceptable either.

Maybe it's the fact that we recently lost a good friend to CF, but I doubt it. Samantha is years away from being a life-or-death concern. Maybe it's the fact that I have other issues going on in my life, like my continual recovery from wrist surgery, or the fact that this was supposed to be spring break. Maybe it was just because I got a nap and now I'm awake. Maybe all of those are part of the reason.

Yet the biggest issue is that we were supposed to be at home tonight, sleeping soundly in our own beds. This disease is a funny thing. One day you think you're on top of it and the next you're in an ambulance headed from the ER of one hospital to the CF ward of another. Stupid cystic fibrosis. It's the one problem I have that isn't just a first-world problem. This one is real.

As of this moment, the nurse doubled her oxygen flow and her body has responded. She's now at 95% saturation. This will do for now. PFTs in the morning. Time to try and get back to sleep.

Almost ABPA

One of the things that made Samantha's recent hospital stay so confusing and frustrating was the reason that she what got her in the hospital in the first place. Actually, to make it more concise, it was the lack of knowing what got her in the hospital that was confusing. At first, everyone thought it was a bad asthma attack that triggered what basically amounted to a fight between her lung's asthma reaction and cystic fibrosis reaction. Since they were fighting against each other, they essentially kept getting worse until her lungs were so clogged we had to have her hospitalized.

Then, a basic allergy screen came back with elevated levels of aspergillus, a fungus that anyone can grow in their lungs, and usually doesn't cause any problems, but can mean trouble for asthmatics and CFers. It was thought, based on this initial screening, that Sam's body reacted violently against the fungus and her CF went into overdrive, so it was no longer an asthmatic exacerbation. To fight back, the doctors put her on a fairly high dose of steroids. In the longer term, as she was to be brought down off of steroids (called "tapering"), she would need shots every 2-3 weeks. It was very unnerving to us. If you know Sam, you know she is deathly afraid of shots.

Making things more frustrating was the fact that the testing took so long. Or at least I'll say it was very frustrating for me. However, we finally got results back!

From Alicia:

Sam's pulmonologist called today to tell me Sam's test results have come back negative for ABPA. Without getting complicated, Sam falls in the "possible" category which means time may reveal something more, but for now she is considered NOT to have it. 

So what does that mean for us? We will start tapering down her steroids immediately, watching very closely to see if any wheezing or coughing returns at each reduction. The best news in my mind is we just avoided shots every 2-3 weeks, which was going to be the treatment. Yippee!!! It also means that Sam's asthma went into overdrive for the first time in her life, most likely triggered by several environmental allergies we have discovered. We'll be seeing an allergist and "beefing" up the asthma preventative treatment. 

You've all been so good to pray for us, so what to pray for now: The tapering down of the steroid can be tricky physically and emotionally, so please pray for lots of love and understanding around our home. Also, if you have seen Sam lately you can tell she is looking ROUND. That weight gain is from the steroids, and will fall off as we taper. Please pray as we transition back to keeping her BMI at a strong level without the steroids.

First hospital Stay Recap

We are extremely grateful at the Smith household. Not only has Samantha recovered very nicely from what put her in the hospital (we are still waiting on final results on that issue), but she has rebounded so well that her PFTs are higher than when she went in and she's gained over 5 pounds! Yes, things are good. It's amazing what two weeks of antibiotics and steroids will do for you.

Before too much time gets away, I wanted to post about our time in the hospital, to sort of give you a recap in case you didn't see every day's post. If you haven't, and are just curious, click HERE to see the daily journal from the hospital.

In a word, the concluding thought is frustration. Being in the hospital is an inherently frustrating experience. At several times throughout the process, I nearly pulled my hair out. At others, I wanted to pull someone else's hair out...or scream...or worse. I had seldom-seen such miscommunication from a group of professionals before the hospital stay. Yet it was not all bad. But that's not all this post is about. I wanted to give you a real recap, so here it is:

Favorite day: My favorite day in the hospital was when we got to take Sam out for some R&R. I had no idea that families got to do this periodically. It really made Sam's day to get her hair done and eat some good food. Here is the journal entry from that day.

Least favorite day: There are so many. However, my vote for that one is Monday, the 4th Day in the hospital. The reason it's my least favorite is because it was supposed to have been the day the doctors would decide to do a bronchoscope to find out how clogged up she still was and what they needed to do about it. I truly believe, and I think the evidence proves it, that if they had done the bronch on that day, she would have been better sooner.

Favorite staff: By far, we were most blown away by the nursing staff. They were courteous, professional, and extremely knowledgable. The actual individuals are too many to count or discuss as they were simply great as a whole. I don't remember a single one that bugged me or made me angry.

Least favorite staff: No brainer here: The Respiratory Technicians. I could have done treatments better than they could have, and I wouldn't have tried to dodge the nighttime treatments like some of them did. As a complete 180* from the nurses, as a whole not a single RT impressed me, but several needed to go back to school and a couple got talked to, if you know what I mean.

I don't want to make this a crazy-long post. I just wanted to give you my impressions on the hospital stay. It was our first, certainly not our last, and it now puts me squarely in the fathers-of-hospitalized-kids-club. So it goes.

Taking Advantage of a Hospital Stay

As you know, Sam is in the hospital and will probably be in for the next week or so (read about her stay here). My question for the CF community is: Do we do a big fundraising campaign to take advantage of the situation? Cystic Fibrosis is on the minds of all of our friends, family, coworkers...everyone...because of his hospitalization. We've had a few dry years as far as fundraising goes and Alicia brought this up as a possibility.

I'd love your thoughts on this as it's something I'm very willing to do. We've had a hard time really connecting to the CF community in Chicago/Milwaukee, but it doesn't excuse our responsibility to work hard for a cure.

The biggest disadvantage I can think of off the top of my head is that it seems a little underhanded to ask everyone for money when all everyone is trying to do right now is just support us as lovingly as possible. I don't want to take advantage of people, just the situation that we're in at Children's Hospital of Wisconsin.

So, what do you think? Should we make a big push?

Sam is in the Hospital

For those of you who aren't "friends" with me or Alicia on Facebook, Samantha is in the hospital in Milwaukee, WI, for a tuneup. I'm posting about it in more detail over at my personal blog: www.navychristian.org. 

Chicago Marathon and Cystic Fibrosis

Dear friends of Samantha,

As you know, our daughter Samantha has cystic fibrosis, a disease that, without a cure, will spell her early death at the age of 37. I hate that with a passion that has driven me to do some pretty crazy things…like sign up to run a marathon!

Yep, you heard that right. I'm running a marathon!

This year I'm signed up to run the Bank of America Chicago Marathon on October 7th. While I'm going to do the running, you're the one who has the chance to actually make a difference for Samantha. I'm running for the Cystic Fibrosis Foundation, and your donations help us help Sam.

Many of you have given in the past, particularly when I ran the Carlsbad Half Marathon when I lived in San Diego or the Barrington 5K here in the Chicago area. I've always been grateful for those who have supported us in the past, and I thank you.

Yet there is so much to do still. Until there is a cure, and until Samantha isn't under threat from cystic fibrosis, I'll keep running…and I ask you to keep giving! Thank you for your time and your consideration!

You can read about my running at www.navychristian.org. Click on the label titled “running” and read some of my journey!

Please donate to our cause…our fight…and help Samantha continue to live a healthy, vibrant life. With your help, we'll whip Cystic Fibrosis for good!

Donate here at the Cystic Fibrosis Foundation: http://www.cff.org/LWC/DanielSmith

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Sincerely,
S. Daniel Smith
www.navychristian.org

Hannah and the Chance for Cystic Fibrosis

For those of you who don't know, Alicia gave birth to our second daughter, Hannah Grace, on the 9th of April. You can read about her first day with us here. A few people have asked me in the run toward her birth about cystic fibrosis, and if we were concerned that Hannah may have it. Since the pediatrician just came in to discuss getting the newborn screening done, my mind has wondered back to the subject.

So the question is, "Am I concerned that Hannah might have CF too?"

I know that there is a 1 in 4 chance that Hannah will have CF. Boiling it down to pure numbers, it doesn't matter that Samantha has it or not. My wife and I are carriers. There is a 25% chance that she has the disease. Period. No need for argument.

But we don't live life in numbers. We live a life of emotions, fears, etc. Am I afraid that Hannah will have CF? Not really. I'm probably a little in denial about it I guess, but the fact is that I'm not worried.

If Hannah has CF, then we will treat the CF and hope for a cure for two kids instead of one. If Hannah doesn't have CF, then we will enjoy that fact, praise God for it, and continue raising money for a cure for Samantha's disease.

Honestly, it just doesn't matter. The blood tests will be back in a few weeks. We'll know then. We have a great staff at Milwaukee's Children's Hospital who know our situation and are seemingly as eager to find out the results as we are and who will begin an immediate care plan for Hannah if she does have CF. I'm sure they will rejoice with us if she doesn't.

God is bigger than me, more powerful than me, and infinitely more good than I am. He knew Hannah before she was in the womb. He's got her back.

Why I wear red Shoes

Ever since I started my training for my first half marathon back in 2009, I have worn running shoes that had at least a hint of red on them. The picture above is my newest pair that I purchased to start training for the Chicago Marathon for this October. I don't expect these shoes to last me until October since I'll be putting a lot of miles on them by that point, but they will get me through an arduous training program. As July and August near, I will need a new pair (sorry honey), and hopefully I'll be able to find a pair I like that have red on them.

Why red? Simply put, red is Samantha’s favorite color. Why do I wear it? Because the marathon isn't for me, it's for her. Yes, it will help me with my weight issues (if I train correctly) and satisfy the itch to perform and compete, but the bottom line is that I'm raising money to fight her cystic fibrosis by running this marathon.

So the red is a reminder that, with each step I take in training, I'm a little bit closer to ending her disease. Someday, maybe not all that far away, I will be able to say with a high degree of certainty, that we found a cure. Then I'll have to run marathons for another organization, and I'll find a good color for that one too.

She's so Skinny!

I was at Wal Mart with my daughter trying to spend her Christmas money a week ago or so. Her sno-globe had broken and she wanted a new one. Well, it was her money, so guess she can have one if she wanted it. Anyway, we were looking around the store when an older woman saw Sam and me walk by. I think Sam's size startled her.

She did a double take and said, “She's so skinny!”

“Yes she is,” I said dismissively.

“I mean she's skinny!” Like I hadn't understood it the first time.

“She has a disease,” I said as dismissively as I had the first time.

The lady just stared at her and then at me. I'm sure the fact that I'm overweight didn't help things. She probably thought I starved my daughter or something. I don't know. As awkward as our conversation had already been, it was made even worse by the fact that she just wouldn't walk away. Finally, in as much of an act of desperation as anything, I started to walk away with Sam. The lady turned and left as well.


Ma'am, my daughter has cystic fibrosis. It's a fact of life, at least for her. I'm happy if she gains any weight at all. Thank you kindly for not staring at us like we're aliens.