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?

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. 

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.

Samantha's Surgery

Samantha is still recovering from a 3-procedure surgery. None of it is anything new for you CFers. She had pretty much the usual gammut of things. They took her tonsils, her adinoids, and they did a sinus surgery, opening up her right side.

Since this was Samantha's first surgery, Alicia tried to prepare her as best as she could. She made a cake, and Timothy even read a book about tonsils!

 

This is Samantha before surgery. The black mark by her right nostril is to tell the surgeon that it is her right sinus that is being operated on. 

Here is what the saw in the sinus...P for Polyps!

 

Samantha after surgery 

Timothy was so sweet for his sister. He tried hard to comfort her at the hospital:

Overall, Samantha is healing fine. We know the surgery was successful. It went so well that the surgeon said it was boring, which is how he liked them (I like that idea too!). She's still struggling with some pain, but doing much better overall. It was kind of touch and go for awhile because her nights were miserable, but I think we're seeing the light at the end of the tunnel.

Thank you all so much for your prayers. Things are really good now and we're grateful for her recovery!