Going Home!

Last night, around 10:30pm, we pulled into the driveway at our house in North Chicago's Great Lakes Navy Housing. We were tired, but happy. Samantha got to reacquaint herself with all of her stuffed animals and sleep in her own bed for the first time in 13 nights. When she woke up this morning, she did her breathing treatments and vest therapy and went to school. This one is in the books. It's over. No more PICC line, no more midnight and 4:00 AM treatments. At least until the next time she's in the hospital.

Hopefully, we've learned a lot about how to take care of Sam (we feel we do) and how to handle her going into the hospital. We've also learned how a hospital staff operates and while I don't completely understand the chain of command, I've learned how to get things accomplished most of the time. In the coming days, as we get settled back in to life here at Smithica, I'll write more about it.

Anyway, we came home last night to a wonderful surprise. Samantha's best friend Savannah and her family (as well as another neighborhood kid) decorated our front door and garage for Sam. Here are some pics of what we came home to:

Please forgive the trash can picture. Anyway, I thought it was really nice to come home to those decorations, and I'm grateful for them. Sam got a real kick out of seeing the house done up like that.

One of the things I will actually miss from the hospital stay is the view we got from the room. It was wonderful for contemplation and for seeing God's handiwork (ok, and humanity's handiwork as well).

Pretty soon I'll be going back to writing about issues affecting the military and Christianity, but for today I'm just going to be happy we're all home again under the same roof. Thank you all for your prayers and your help. We needed you and you came through. 

When Cystic Fibrosis Gives you Lemons...

You punch it in the face!

We've got Cystic Fibrosis on the run up here in Wisconsin. With the help of a dedicated team of doctors, nurses, respiratory therapists, and many others, Samantha is coming along very well and should be able to leave the hospital soon.

What we want to start focusing on now is helping Sam in the long term, especially with the looming APBA diagnosis.  This Sunday we are joining with the Barrington, Illinois Great Strides Celebration. In doing so, Alicia and I would like to give you the opportunity to help us punch Cystic Fibrosis in the face!

As many of you know, each year we try to raise some money for Cystic Fibrosis research via the Cystic Fibrosis Foundation (CFF). Alicia and I donated $50 to our fundraising, and we would appreciate any dollars you could give via online donations. They are tax deductible and will help Sam by reducing the effect of CF on her life. If we can give the money, then researchers can find the cure. We want to do our part and hope you will join us.

Cystic Fibrosis gave us some lemons. With your help, we'll make some lemonade this Sunday. Please donate by clicking below:

DONATE HERE

Samantha in hospital, Day 12

Today was a big day for Sam! In order to go home, she needed her Pulmonary Function Tests (PFTs) to be back to normal. To show you the process, I'll give you a brief historical rundown of her status with these PFTs.

Normal baseline: 97
Checking into the hospital Friday 17 May: 44
First update at hospital: Monday 20 May: 42
Second update at hospital: Thursday 23 May: 51
Today: 70

So, as you can see, she was in a pretty bad way when she first got checked in. Basically, and this is only basically, she was only getting half of her lung power. So we've climbed up quite a bit since then. Unfortunately, there is still quite a bit to go.

There is a chance...however small...that Sam will go home on Friday!!!

Ok, back to reality. Thursday will determine a lot. If her next PFTs are good, then she will probably get to go home. However, if they aren't close to her baseline, then she won't be cleared.

Diagnosis

For the last few weeks, we've been working off of a theory of an asthmatic exacerbation that triggered a Cystic Fibrosis exacerbation. It's been a very challenging time as these two have magnified each other's symptoms and made it more complicated to get any of it under control.

After seeing little to no improvement, Sam's attending doctor performed a bronchoscopy.  Those culture results have come back and Samantha has tested positive for a fungus called Aspergillus. It can grow in healthy lungs, but for some people with Cystic Fibrosis (and asthmatics) it can cause an extreme allergic reaction. That reaction is called Allergic Bronchopulmonary Aspergillosis. Thankfully, as with most medical issues, it has an acronym: ABPA. The official diagnosis will be based on a detailed blood test, but Sam's doctors have started her on treatment for it believing the blood test will come back positive.

We've briefly been told about the treatment plan which includes 1-3 months of tapered down steroids, anti-fungal meds, and then injections every 2-3 weeks.  Mom is trying not to think about this yet.

How it Affected Sam

But how did a fungus that healthy people have turn into a hospital stay for Sam?

First, the fungus grew. We don't know how it happened, but since it grows in decaying matter, I figure Sam picked it up while playing down at the local brook that runs through our neighborhood.

Second, her cystic-fibrosis-infected lungs reacted (this is the ABPA) by secreting more mucus. In a normal body, that mucus would carry the fungus out.

Third, because cystic fibrosis patients have thicker mucus secretions than normal lungs, it eventually collapsed several lung lobes and led to the exacerbation.

This leads back to the PFTs. When lungs are blocked, PFTs are bad. Now that we're clearing out her lungs and treating the cause, and it's just a little slower process to get back to baseline than it normally would be.

Samantha in the hospital, Day 10 (Sam gets a break!)

Sam got a short break on Day 9 from the hospital. We were allowed to take her out to lunch at Applebees (Timothy wanted to pay for her meal). She had a great time, but since the following night was so bad, with her "deserting" into the 70%, I didn't think we'd get to go out again. Thankfully, the doctors felt it was still ok to get a pass from the hospital to go out for a few hours. 

What did Sam want to do? Get her hair done! Well, she's definitely a girl. With all of the effort she puts in to exploring little brooks and catching preying mantises, sometimes I wonder. Anyway, I readily agreed to the hair cutting because I needed one pretty bad. I hadn't shaved in 10 days and my hair was getting pretty unkempt. 

So we went to get her hair done. Sam really enjoyed it, and the ladies at the Supercuts made over her real nice because she was on a pass from the hospital. It was so nice. 

Because I was in the Navy, and my stylist (do guys call them that?) wanted to thank me, I got a scalp massage out of the deal. That, my friends, is awesome.

So if you ever need a haircut and you are near Wauwatosa, WI, go to the Supercuts. They rock!

Health update for Sam, Day 10

Alicia wanted to give an update based on her thoughts and I agree whole-heartedly. So, for today (and any time she wants) she is giving the update. Without further ado: 

I want to thank you all for being there with us. We have felt incredibly supported, and I think I can speak for Dan when I say we never would have handled the twists and turns of this week without your prayers.

We have already posted our happy pictures of the day...what a difference a week makes! I thought I would give you a medical update, which will include items to be in prayer about over the next few days:

1) They took Sam's blood tonight to test for allergies-we won't get those results back until after we leave the hospital. This is the first step in learning her entire allergy/asthmatic picture that has played a huge roll in all of this.

2) Sam has now passed 24 hours of being on "room air" instead of breathing on oxygen. I just want to cry I'm so happy!

3) She is back down to 4 treatments of CPT (chest pounding) from 6.

4) Her chest x-ray today showed some improvement in the right lung (where 1 lobe was affected), but honestly the left lung looks about the same. The real key is going to be her PFT numbers on Tuesday.

5) Also by Tuesday we should know culture results from what they pulled out of her lungs during the bronch. This is key because if they find something that hasn't been indicated until now, they will modify the type of antibiotics she is on.

6) They will slowly reduce her steroids all week, having her off of them by the 16 day mark.

7) Lastly, she started hypertonic saline this evening, which is very significant since this will be added to her daily regimen when we go home. CFers use hyptertonic saline to help thin those thick, sticky secretions in the lungs. The potential side affect (we have learned) is that it can aggravate the airways of those with asthma. Since Sam has kind of been in a 10-day asthma attack, they have not wanted to start her yet. As far as we can tell, the asthma side of this whole thing has finally gotten "in check" and now we can focus on the CF side. They have her on a low level dose to be careful, and her body accepted the first treatment with no problem.

Note from Dan: Up until about 10:00pm, things were swimming along. Unfortunately, we had to take action last night to help Sam stay healthy. Here is the update from Alicia.

Dan stayed with her last night, and even when we were saying goodnight on Facetime around 10 she started to cough a tiny bit. Her O2 dipped for a sec (the machine goes starts beeping at 88, so we heard that briefly), but then she was steady before going to sleep.

Around 11, things turned worse and for the next 2 hours or so she just kept dipping (even multiple times to the 70s where she has never been before), needed albuterol, and continued needing more and more O2. They finally got her settled down and by 3 or so she didn’t need oxygen at all.

Needless to say, this is disappointing. It’s not good news, but it also doesn’t mean we’re back at square one either. I’ve been reluctant to give her “entire picture” on FB because people tune out after the first few words. I’ve written it above for you fairly detailed. The quick version is that the positives are her lungs sound clear and her O2 levels are up (when they are up!). The negatives are that her left lung still looks pretty full and her PFTs are not where they should be. So it’s never one thing in particular, but all of these items as a whole that tell us where she is.

Most likely the cause of her dips are mucus plugs moving around. So you have to imagine these sticky globs different places. So one is in a particular airway, Sam coughs and moves it, and it happens to settle in an area that actually closes off an airway…then the O2 goes down. The good thing about the mucus moving would be to get it up and out, but she has a lot and it’s VERY sticky the dr said (even stickier than usual CF sticky) so it’s just moving to different spots.

The reason the “worst” symptoms are behind us is that it looks like on the whole they have the asthma side fixed. She basically just had a 10-day asthma attack, and if you’ve ever seen a child in one, you know it’s extremely scary, but once it’s under control it’s done. CF is much quieter…it doesn’t have the violent symptoms (at this age) that asthma has, but it also doesn’t like to be resolved as quickly either. That’s why kids with CF are on multiple preventative treatment daily. So now we deal with the CF side, where Sam looks (and feels) MUCH better, but it will be a little bit before we’re back to her medical baseline.

That was all meant to explain, not scare of confuse. I hope it did the trick!

Samantha in the hospital, Day 8 and 9

This post covers two days because the hospital is becoming a waiting game. Samantha is getting better literally by the minute. Right now as I type this post she's drawing a card for someone. She says she doesn't know who yet. Anyway, she's getting better. If you'll look at the two pictures of lungs below:

You can see that the one on the right shows much more of the right ribcage than the one on the left. That, according to the doctor, is how much of a breath that Sam had taken in when getting the x-ray (she had taken a deeper breath on the left picture). I thought was pretty cool!

Unfortunately, there hasn't been all that much change since before the bronch. The picture on the right (which is the newer one) doesn't show any difference. All they mean is that there is still junk in them, particularly the left lung, and that it's something they are still watching. I'm hoping to get the video for the bronchoscope tomorrow. I'll definitely post it if I do!

The Other Children

I wanted to take a minute to update everyone on how Timothy and Hannah are doing. First of all, they've been troopers. But the fact is they can be left behind in the race to take care of Samantha. Because we value them as well, I wanted to show you a few pictures of them in the hospital helping out and such. Captions are below the pics.

 Hannah and Tim fighting over the 3DS on Day 2. They were really having fun! Thankfully, Tim didn't get upset about the intrusion. Sometimes he can be pretty funny around his games.

 Samantha doesn't really like video games too much, so we let Tim check out a couple throughout the weekend to pass time. We don't have a PS3 at home, so he was getting to enjoy it here.

 Yes, I caught my son scratching like we boys do. 

 Hannah has been the real surprise. She has been completely thrown off her usual schedule with daycare and/or being at the hospital. Here she is playing peek-a-boo with her momma!

 I took Tim and Hannah to AWANA awards Thursday night. Timothy was getting awards, and we wanted to support him through it so he would know it wasn't all about Sam's hospitalization. Next to him is Ethan, his Bible quiz partner. They won first place a few months ago! We are so proud of them!

 Timothy accepted Sam's awards on her behalf. He was much more grateful up on stage than in this photo thankfully!

Here he is with his own awards. He got a silver award, an Excellence trophy, and a $10 gift certificate to Applebees for his Bible quiz competition. He bought Sam her dinner tonight! So sweet he is!

We love all of our kids so much. With Sam in the hospital lately, we've had to focus on her a little more, but we do our best to keep all engaged in the family, and so far we're doing ok. Thanks for reading our updates! 

Sexual Assaults in the Military and the Christian Response

With the news lately focusing on the horrible problem of sexual assault in the military, it may be difficult for church leaders, and Christians in general, to figure out how to reach the military. Sexual assault is not something the church often deals with. Ironically, until a few years ago, the military didn't really deal with it either. It was sort of the elephant in the room. People knew it happened, but the programs hadn't really matured enough to do anything about it. I'm grateful that better programs exist today to combat the problem.

The thing that makes me most angry about the issue is that it's almost always blue on blue, meaning that it’s a Sailor hurting a Sailor, Marine hurting a Marine, etc. That, my good friends, is unsatisfactory!

President Obama's present concern over the level of sexual assaults in the military, and the number of congressional hearings on the matter (which I discuss here), mean that the problem is now really coming to the light. The church can assist, but it must do so carefully.

First, Christians must know that it's not the victim's fault. Really, it doesn't matter what happened up to the point of being assaulted. If an assault occurs, then the attacker committed a crime. It doesn't matter what the victim was wearing. If you are one to assume that the victim somehow deserved what happened to him/her, then you are wrong.

Second, know that it doesn't just happen to women. In fact, more attacks are against men. That makes sense from a purely statistical standpoint. With 80% of the force being men (for the Navy), it only makes sense that the majority, while not an overwhelming one, of attacks would be against men.

Third, since these attacks are criminal in nature, Christians cannot get overly involved in the physical sense. I had a Sailor once who was violently attacked. I still don't know the whole story. She got the help she needed, her attacker was brought up on charges, and she eventually returned to my basic electronics class and graduated. However, my role was just to be there. I couldn't do anything else.

Point three brings me to my fourth and final point. The main mission of the church is evangelism (in my opinion based on scripture). However, in this case, the battle ground is in prayer. Prayer of course should be peppered onto every facet of life, but it is the primary battleground in terms of sexual assault in the military. I know that I talk about prayer a lot. I am always asking for prayer on behalf of the military. That isn't going to change any time soon. In the case of sexual assaults in the military, it may be the only way the church can respond.

Please do so.

Samantha in the hospital, Day 7

It seemed like time was standing still. We were just waiting on things to happen for what seemed like eternity. Each day would pass and this or that would happen, and we'd just wait...wait until that magical Thursday to get here, when all of our dreams would come true.

Ok, so it wasn't like our dreams coming true, because that would be going home and getting back to normal (ok, our type of normal). But Alicia and I had become convinced that Sam needed a bronchoscope pretty badly, and the doctors wanted to wait until Thursday to do a new round of PFTs to find out if she needed it or not.

All of the sudden, Day 7 comes along and things start clicking. It started with various doctors coming in as usual to get their morning rounds through before the actual rounds start. Then I was called out into the hallway to discuss Sam's progress and discuss the plan of action.

After listening to the various opinions and expert knowledge, I was asked if I had any questions or thoughts.

"I just want to confirm something so I understand exactly what's going on," I said. "Sometimes I think that we aren't doing the bronch and you're just holding onto the scheduled bronchoscope time just in case. Then sometimes I get the feeling that we're doing the bronch and something would have to change in order to cancel it. Can you please tell me very directly which it is?"

"We are doing the bronch," said the attending physician, a woman with a Greek last name and the first name Diva...long "i". She's the bomb honestly. Anyway, she went on to say, "I didn't mean for you to be mislead. We expect to have to do the bronch. If her PFTs blow us away, then we'll cancel it, but we don't expect to be blown away."

I can't tell if everyone is tiptoeing around me because this is our first tune-up or if this is how doctors talk and I have to get used to it, but it really isn't cool to sugar coat things to the point where a father is confused. I'm not only my daughter's advocate, but I'm also their best bet for getting Sam to comply with treatments. Having me fully engaged is the best option.

Pulmonary Function Tests

Sam headed down to do PFTs.

PFTs (Pulmonary Function Tests) were conducted around 10:30. She blew a 51, which was 9 points above last time, but not nearly enough to put off the bronchoscope. When I talked to the doctors after returning to her room, they were all on board with the plan and very informative. I think I'm finally starting to bond with some of the doctors.

A Ride on an IV Cart.

After spending some more time in the room, we got Sam ready for the bronch. I explained some things to her while telling her that she couldn't eat or drink for a long time (I did that at breakfast) but after the PFTs, Alicia and I explained it in much more detail. She was concerned, but not scared yet.

Here's the irony of the whole thing. Sam is obviously doing much better. Her oxygen saturation is up, she's got energy, and she's not coughing nearly as much. She's feeling so much better, actually, that she took a ride on her IV cart.

Yet she is also very sick still, as evidenced by the PFTs. So it was with a great deal of confusion that I went with her and Alicia to the OR preparation room.

Bronchoscope

We took Sam down to do the bronch around 4:00pm. She was in good spirits, but getting more concerned as we went. She came out around 5:30 and finished with recovery by 6:30. Here is Alicia's report (I had to leave the hospital to take Tim to an AWANA awards night:

1) 3 lobes were blocked (lower right and both on left)
2) Very sticky-even more than usual CF sticky; they had to work a bit extra to get it out-she said they did 2 CF bronchs today and Sam's was much thicker
3) The extra thickness could be just the way Sam's CF is or it could be from some "bug" in her lungs-results from culture will come back in a few days
4) It's normal for CFers to cough during this procedure, but Sam thankfully coughed less than the dr thought-this allowed the dr to stay in there as long as she needed.
5) Airways were inflamed (can be from the asthma or the CF)

So it was very good for the doctors to go in and clear some stuff out. Clearly the PFTs were a very accurate description of what was going on inside her lungs. 

Sam's Mountain Lion (she received him during the PICC line) has to have an oxygen mask after his bronch too.

So our Day 7 was extremely busy and lots happened. Now we settle back down to wait. We are waiting on results of the culture from her bronch, waiting for the next round of PFTs to see if the bronch worked, and waiting for her to not need any oxygen anymore. Most of all, we're waiting to get out of the hospital.

Reflecting on my Career

Every now and again it's good to sit down and reflect on one's career. Many of us do this at the yearly anniversary, so today I reflect on 17 years of active Naval service and where to go from here.

The biggest question in my career has always been how long do I plan on carrying on with this thing? For a long time I assumed it would be 20 years and not a day more. The thing is that I had always wondered what I would do after the Navy. To me, the Navy was always what I was doing now, but not my actual life. So it was always important to me to plan for the next step. I am signed up for Troops to Teachers in at least three states (and still getting emails from them) and I got my Masters of Arts in Religion...all based on what I MIGHT do after the Navy.

This is the attitude of a junior sailor who plans to get out after one or two tours. I think that since I displayed that attitude early in my career, I had never made the switch to a career mindset. Thankfully, I had some exceptionally strong mentors who guided me even when I couldn't see where I was headed.

One of those men is James Edwards, a Master Chief who is scheduled to commission as a Chief Warrant Officer in November. Like father like son, I suppose, I follow his steps. In this case, very literally as I commission one month after he does. He was the one, when I was a Petty Officer First Class, who taught me to treat the Navy like I was staying in it forever instead of just the current tour. That mindset has paid me back tenfold since meeting James.

That mindset came to it's fruition a few months ago while I was finishing up one of my last seminary classes. I was again assuming that I was just a few years away from not being a sailor anymore when it finally hit me that God has kept me in the Navy and directed my career path. Even when I tried to derail things a little over a decade ago, God has kept me stable.

Now I don't think in terms of how soon will I retire. Instead, now I think in terms of how long can I go and what can I do while I'm here? And good thing too. I'm guaranteed to go to 23 years since I'm accepting the commission as a CWO. Looks like I'm in it for the long-haul!

My wife and little ones know that I'm a Navy man and that I deploy, and they support it. Everyone except Hannah has been through at least two deployments. I expect we'll make it through many more. I try to be as involved as possible while in port and even on deployment. I'm so grateful for a dedicated and supportive family. It is what makes the difference. I see some poor guys who don't have supportive families and I can see the additional stress it puts on the career and family. Alicia has been a constant companion to me through this. She and I have been together for 13 of my 17 years. It's been a good ride.

So 17 years down...somewhere between 6 and 16 to go!

Samantha in the hospital, Day 6

Samantha's 6th day in the hospital was largely uneventful. Mostly we waited for things to get better. While her O2 saturation was holding at 94-ish, the pulmonary fellow said what Alicia and I were already thinking...by now it should be higher. This is especially true since it continued to dip into the 80s periodically. At the morning rounds, the pulmonary attending physician said that she expected Sam to desat (desaturate, meaning dip below the "safe zone" of 90+). That's apparently not supposed to be going on this far into the hospitalization.

Needless to say, Alicia and I are unnerved slightly by this. She's cooler about it than I am I think, but unnerved we both are just the same. What bothers me is the continual threat of a bronchoscope. A decision was supposed to be made on Monday after PFTs and and x-ray, but they held off. Then she started to get better, so we thought it was forgotten. Then on Day 5 they mentioned it again, even scheduling it as a precaution. Finally, on Day 6 the attending and fellow both talk like it's a foregone conclusion. I hate how fluid this disease is. I'm not patient enough to be in this world.

The problem is the asthma. Many of the treatments used to combat an asthma exacerbation are counter-productive to fighting a cystic fibrosis exacerbation, and vice versa. This is what is ultimately frustrating. Medicines and treatments meant to break up the junk in her lungs irritate the lung linings, which cause her to cough uncontrollably at times. Then atrovent, a medicine to calm her asthma, dries out the mucus in her lungs, which is already thicker because of CF, and her body has a harder time moving the junk. It's enough to make a person scream!

In other news, Samantha received two things in the mail today. My aunt Carolan sent her a wonderful card, for which Samantha is very thankful, and Lola (her maternal grandma) sent her chocolate-covered strawberries. She's been completely spoiled while being in the hospital, but we are allowing it for the time being. Breaking her of all the goodies when she goes home will be an interesting exercise.

Being a Patient's Advocate

Being a patient's advocate, in this case for our daughter Samantha, is a case study in conflict resolution. Don't believe me? Read on.

On Day 3 of Samantha's stay in the hospital, Alicia ran into some issues at night with the respiratory therapist not wanting to do the number of treatments that Alicia had been led to believe should happen. She had to get a hold of a doctor to finally sort it out. This was disheartening, but since we had already had some issues with this RT, we figured it was just him that was the problem.

By Day 4, when I took over, we thought everything had been ironed out. Wouldn't you know it...the new RT thought he was supposed to do a different number of treatments than I did. I was extremely frustrated by this, but it was really just part of a larger picture.

We were also supposed to know by Day 5 what the doctors were going to do about a bronchioscope and what her future treatment regimen was going to be. We wen't all day without hearing about either. By evening, when the new RT said he was only doing x number of treatments instead of y, I was unnerved. I called for the nurse, and calmly explained that I had been asking for information all day and wasn't getting any. Then I asked her to please make sure a doctor comes to see me.

A resident showed up about a half hour later. I walked outside the hospital room with her and explained in detail that first and foremost, the RT was not doing the agreed-upon number of treatments. Either he was right, or I was, and since I was working off of what the doctors had last told me, I felt I was. Turns out I was right about being right. Secondly, I wanted to know what the xrays taken the previous day meant. She explained to me some more details of that, but told me that a decision had not been made on the bronchoscope.

Suddenly, the next morning, I was inundated with information. Doctors were practically falling over themselves to give me information that I should have been given the day before. I still noticed inconsistencies with their information, which continues to frustrate me as our stay goes day by day. Still, it was good to finally get the information we had asked for the previous day.

I'm sure I was labeled "that" dad. I tried to be respectful every time I asked for information and when receiving that information from the doctors, nurses, and respiratory therapists, I showed gratitude, because that's exactly how I feel. Alicia and I both thrive on information. It's really all we want. I don't pretend to know enough to be a part of the decision-making process, but I obviously want to know what that decision-making process is. We have a life of CF and asthma ahead of us, and I am an engaged father.

Samantha in the hospital, Day 5

I'm breaking this post up into two parts to cover two separate issues. I'll post the second entry this afternoon. Day 5 was full of frustrations, but we finally started getting somewhere with many of them. Sam has periods of time where she's bouncing off the walls, and yet still some times when her oxygen saturation starts to fall and she loses energy. We're learning how to deal with those times. Her attitude also rears itself at the most inopportune times, and we're having to deal with that too. We stay as gentle as we can while letting her know that her attitude is unacceptable.

Day 5 was really about taking care of Samantha's other needs. For example, mom brought a bunch of her school work from North Chicago when she came. The hospital's teacher came in and went over a lot of the assignments with her. Samantha was really excited to work on her school work. She's crazy that way.

Sam also got to meet the hospital's life sciences person. She brought paints, construction paper, tape, crayons, and stickers so that Sam could just really get all childlike and lose herself in art. Samantha is a very artistic person. Seeing her working on a project is like seeing a bit of her heart in action. She just loves it so much. I think the smile says it all.

Finally, the physical therapist came by. Sam enjoyed the beach ball and we played with it for a little bit, but the fact is that I didn't find much value in the experience. Playing with Sam was great, but the PT just seemed to kind of be there to show that the hospital had one. I'm glad I'm not paying for it.

As I said earlier, I'll post again on things that concerned Sam's health in a little bit. It's kind of a frustrating post, so I need to make sure I do it right.

Samantha in the hospital, Day 4

I'm starting my blog post about Day 4 at a time when not really that much has happened. I'm hoping to stay on top of things better that way. We really went into our day thinking things were going pretty well. Sam had got a lot of junk out of her system the previous night and responded very well to treatments throughout the night. Throughout Day 4, her O2 stats were very good...low to mid 90s. That's good enough to be very happy about.

When Alicia told me about her stats, as well as how good the treatments had gone the previous night, I had to fight off some jealousy. I had wanted to be the one to give good news, since the news from Day 3 had been so nerve-wracking. Confessing those thoughts of jealousy to God, I got Hannah and Timothy ready and we left.

Around 10:00am they came to get an x-ray and then four hours later they did another round of Pulmonary Function Tests (PFTs). Basically they were checking for how much air she can move. On Friday, she tested in the low 40s. Today, I thought for sure she'd test much better. I was so convinced, in fact, that I basically called her recovery on Facebook and Twitter.

I was wrong. Despite her oxygen saturation going up to the low to mid 90s, both her x-ray and her PFTs showed no improvement. The doctor told me the medical term for this is “stable.” I have other words for it, but they don't belong on a Christian blog.

During one of her treatments, a gift arrived. Lola (grandma) Hindman had sent balloons and a new stuffed animal and some coloring supplies. She really brightened up when she got the gifts!

This is me helping Sam with her treatment. For some reason, she was not as excited about this. I'm sure she was just holding it in...maybe.

So we waited for what seemed like hours to see if they thought we still needed to do the bronchioscope or not. I was hoping that we wouldn't need to, but the wait was concerning me. After seriously waiting for hours, and asking for a doctor to come talk to me three times, I finally got someone to come fill me in on what was going on. One of the biggest reasons I was starting to get upset was that the respiratory therapist for the night, a different one from the previous night, wanted to only do one treatment at midnight instead of one at midnight and another at 4:00am. This means that for two nights in a row, with two different respiratory therapists, the orders got changed...by said respiratory therapists. I was started to get frustrated, especially since, for the second night in a row, with two different doctors, the orders had in fact NOT been changed.

So we learned that the lungs were still collapsed in the areas that they had been. The radiologist had ruled out pneumonia, for which we are grateful. No note had been made by any doctor about prepping Sam for a bronch procedure, so I'm assuming she isn't getting one. And after confirming that she really was supposed to get a treatment every four hours, I assume that the goal is to just continue treatments until she gets better.

I should say that the nursing team continues to impress me. Sam liked one so much that she drew her a picture. I think the nurse was impressed and promised to put it up on her fridge. Another nurse came in to change Sam's PICC line cap, and when she did, she brought me a foam pad to put on my very uncomfortable bed. I am extremely grateful for that. For the most part, all of the nurses have had Sam's best at heart and they have showed the utmost in professionalism and concern for their little charge.

Here is Sam's cap being changed:

On another note, our pastor Steve Mathewson, from Crosslife Church in Libertyville, called me and prayed for us over the phone. He talked about our situation and my recent graduation with an MAR from Liberty. Thank you for the phone call!

That about sums up Day 4. I was frustrated most of the day, but it seems to be working out now. I hope it continues to do so. We shall see.

Samantha in the hospital, Day 3

Day three started out simple enough. At 4:30 or so I was awakened by the alarm on Sam's O2 sensor going off. Sometime in the night her oxygen mask had slipped off and her oxygen saturation had dipped into the mid 80s. I slid her mask back on and then watched it creep back up to 90. Being unable to fall back asleep, I got up and did some writing on my new Macbook Pro (Thank you Alicia!). I'll write about that more at another time. I submitted an article to a newsletter, wrote a blog post, and worked on getting my computer set up the way I wanted it.

Around 8:00am Q came in and talked about Sam's situation. Q is the primary CF doctor at Childrens and she's awesome! She spoke very honestly and openly with me about her concerns for Sam's status; most notably that she still needed oxygen in order to keep her saturation up. Everyone had hoped that by day 3 Sam would be able to breath well enough on her own to not need it.

Collapsed Lung

We had already been informed by Q that she suspected a collapsed lung. Actually, only part of her right lung was collapsed. This was cause for some concern, but really no one was too bothered. They just needed her lungs to be opened up more, move the mucus out, and then all would be perfect again. The problem, however, was that Sam's O2 stats were so far off of what they wanted that Q thought they needed a new x-ray. A half hour later, Sam was bravely standing in front of the machine and got her pictures taken.

While I waited outside the x-ray room, another patient rounded the turn, pushed by his father with the nurse walking next to them. The dad and I exchanged nods of our heads in mutual respect.

As soon as we got back up to the room, Q was reading the x-ray. A few minutes later, she asked me to join her outside at the nearby computer station. It was there that she told me that another part of Sam's lungs had collapsed. We were now dealing with at least two fairly large parts of her lungs not being used by her body. Small wonder that she had such bad oxygen stats!

What this also meant was that things weren't getting better. Q reassured me that they had plenty of steps left before anyone would be worried. She tweaked a few things, mostly to avoid causing more asthmatic exacerbations while getting more medicine in her to fix the problem. She doubled her vest treatments to 4 and kept the 2 IPV treatments from the previous day. In addition, she switched part of the albuterol treatments to a different drug called Atrovent. Part of this was due to the fact that albuterol irritates her lungs in an asthmatic manner, which leads to flareups.

When Alicia, Timothy, and Sam got to the room, Sam perked up for a little bit, and then around 7:00pm, her attitude began to sink. That's right about the same time that it started the previous night. We are now starting to notice a trend. Part of it, unfortunately, is due to the night respiratory therapist. I know you shouldn't talk bad about people who are helping you, but this guy has no bedside manner and honestly isn't the best at what he does. It's very frustrating. I don't tolerate Sam being mouthy toward him, but inside, we do understand her feelings.

So Day 3 was rough, but we look forward to better things for Day 4. Hopefully the treatments work!

Samantha in the hospital, Day 2

I'm awake at 4:30 on Sunday morning after Sam's oxygen mask slipped off and the machine alerted us that she dropped below 90 on the O2 reading. After getting her mask back on (I wish she could accept the little nose tubes...might try that again later), I tried to lay back down but couldn't sleep. With that in mind, I decided to get to writing and make this update happen.

It took awhile to get our family back together after I had taken baby Hannah and brother Timothy back home Friday night. When we finally hit the road, we had to deal with a massive detour on I94 in Wisconsin. Anyway, we did manage to get up safe and sound and it is then that I learned more about my daughter's condition.

Dr. Q, who is the lead CF doctor at Children's Wisconsin, came by on morning rounds and talked to Alicia about Sam's situation. She pointed out on the xray that she either had pneumonia or a partially collapsed lung. Thankfully, Alicia didn't tell me this information over the phone. Not sure what I would have done about that. Anyway, since Sam doesn't have a fever, the Doctor Q believes that it's the latter of the two possibilities. Basically, as I understand it, the mucus has become so stuck in her lungs that no air whatsoever can get to a particular part of it, which has led to the collapse.

The goal now is to kill any infection that is in the lungs (in case it is pneumonia) and get that junk out. However, there are a few complications, the main one being that some of the treatments that they would use to get the mucus out cause her problems in the asthma arena. For example, the doctors would like to use hypertonic saline solution to help break up the mucus, but that inflames the lungs, something we cannot afford at the moment because Sam is really struggling with the asthmatic component of her CF. It's just going to be a little bit of a process to take care of the competing issues.

We are extremely grateful, however, for our friendships. On Friday (Day 1), I received half a dozen texts or phone calls from coworkers asking me if I needed any help. Then, on Saturday (Day 2), one of our neighbors sent a gift bag of coloring books and stuffed animals with me to Wisconsin and another neighbor, the mother of one of Sam's best school buddies, brought her friend up! You've never seen Sam so happy as when Savannah was in the room.

When it became clear that Hannah wasn't going to make it much longer without a nap, we said goodnight to mom, brother, and sister and they headed home. It was then that I got to meet the IPV machine. As you can see, it looks like it's trying to suck Sam's soul out of her, but in reality, it's just another one of the tools that the doctors and nurses use to break up the mucus that's hurting her and get it out.

Finally, the day ended in some disappointment. Almost as soon as Alicia and the other kids left, Sam's attitude sank. She began getting defensive, argumentative, sarcastic, and fought her treatments. After the IPV treatment, wherein her attitude was atrocious, I decided to have a talk with her. It was that or threaten her life because she was definitely acting in a way that is not acceptable in my house. When I finally got her to talk to me about the problem, it turned out that she missed her mom. That's when she started crying. Disclaimer: Sam cries about everything. It takes some investigative work to find out if they are real tears or not. These were real. Alicia was already back in North Chicago by that time, so I knew it was a lost cause for the night. When I asked her if she'd feel better if her mom was here and I was gone, she said no. It became clear that she just wanted her family together. She did let me hold her for a few minutes until the crying stopped and we settled on a TV show to watch together. Then, exhausted from the day, Sam and I both fell asleep.

We could really use some prayer for Sam's attitude and her heart. Because siblings can't sleep overnight in her room, we can't both be with Sam at night. So please pray for her little heart as she deals with the feelings of missing whichever family members aren't in the room with her.

Samantha in the hospital, Day 1

Samantha was admitted to Children's Hospital Wisconsin in Milwaukee yesterday afternoon around 2:00pm. It is fairly normal for a Cystic Fibrosis (CF) patient to need a hospital stay periodically to kill off all the things that are making life difficult for her lungs and let her body heal. Alicia and I have been hoping for a few days that they would admit her, but the local hospital in Lake Forest, IL was sure they could handle it locally. That was frustrating, but doesn't belong in this post.

Alicia was a champ. Listen, she's a mom who knows what's up and knows how to take care of her kids. Friday morning Sam was in respiratory distress and not getting better. Alicia basically told the medical staff that we were taking Sam to Milwaukee. By the time we checked in, her O2 stats were 91 (and would fall to 89 within a few hours) and her pfts were in the 40s. She made the right call.

Sam's CF doctor said that she was very nervous for Sam and her staff were on it from the minute we got to the hospital. I just love watching a team in "go" mode. Whether if its on a ship or in a hospital, a team on the move is impressive. Sam was in her own isolation room by 3:00 pm and had a PICC line shortly after that.

Once she got settled in, Alicia and Tim played some games with her to help ease the tension. All did great.

Then it came time to do the first of what will be many breathing treatments. Here are some pictures. We had a great child specialist come in with art supplies. Sam really liked her and liked getting to put things together. Yet another reason we're grateful for the medical staff.

After she was through with the nubulized pulmozyme, the respiratory therapist started her on oxygen because of her low O2 stats.

And poor Hannah, who went almost nine hours without a nap, was a trooper as well and had a wonderful attitude all day. Here she is however, starting to really fade towards the end of visiting hours. She's so precious!

All in all, it was a successful day. We wanted Sam to be admitted for treatment, and she was. It was so good to see the doctors respond in a positive way. Hannah was asleep before we got out of the parking lot and slept the whole way home and most of the night.

I'll update you on Day 2 tonight! Thanks for praying! Keep them coming!