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.

First hospital Stay Recap

Tuesday, June 11, 2013

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

Monday, May 20, 2013
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

Saturday, May 18, 2013
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: