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.

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

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!

Sleepless in Milwaukee, PT II

Monday, March 24, 2014
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

Sunday, March 23, 2014
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

Friday, June 14, 2013
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.