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

--
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.