Check up

Anna had a three month check up with the CF team yesterday. She is doing well and showing "no signs of lung disease" as the doctor put it. We will continue with once a day therapy as a preventative and maintenance.  My biggest concern was her eating habits and whether she was gaining sufficient weight. Despite the fact that she only eats dairy and carbs - she gained the weight to keep her on track. We were told to keep introducing new foods or re-introducing those that she has rejected in the past in hopes she will try them and like them someday....  We will have to wait a week for the results of the throat culture which will indicate whether she has picked up the "CF germs" that I so desperately want to avoid.

Speaking of "CF germs", today we went on a walk around a beautiful pond. No longer content to stay in a stroller, she wanted to throw rocks into the water. I wanted to tell her "no" because I didn't want her to touch the wet soil around the lake. But how can I not let her throw stones when the rest of her siblings are?  I resolved to wash her hands asap, but before I could she threw a fit (as I wanted to continue the walk and she wanted to continue throwing stones) and as she did she stuck both of her hands into her mouth! I was alarmed and angry, and desperate, and crushed, and fearful all at the same time.  She cried the rest of the way around the lake path- and I felt like I wanted to as well.

Yeah!

I finally did it. I picked up the phone and dialed the CF nurse. I wanted to ask if we could take Anna down to one therapy session a day- since I have not noticed her coughing.  I left a message and a couple hours later the nurse called back.  The nurse said, "Great and congratulations." And that was that!  I felt so relieved. I felt like celebrating!

P.S. As I hung up the phone - Anna coughed! But she still seems fine!

Doing well

When I announce to Anna that it is "time for therapy" she replies most days with, "Yeah!" Often that is followed by running to her place on the couch and attempting to scramble up on her own. Then I ask her if she wants books or puzzles, or perhaps we will play with a toy together for the first 20 minutes of her breathing treatment. All other children are on their own during that time and I try to give her all of my attention. She loves to read books. We also do finger plays and songs. When the breathing treatment is over, it is time for the vest therapy- and with that comes a video. (I often wonder if that isn't where the initial "yeah!" comes from when I tell her it is time for therapy-a.k.a "time for a video" in her little mind!) She sits alone sometimes, but more often Luke is right there by her and if they can manage it, the bigger kids watch the "made for toddler" video as well! When the timer goes off on the vest 20 minutes later (now a full 50 minutes of therapy) she again says, "Yeah!" I unhook her from the vest and she glady watches the end of the video.  We repeat this entire process in the afternoon or early evening for a 30 minute therapy session.

She has been doing so well that I have been considering contacting the doctor to see if she can go back down to one therapy session a day. But then as soon as I think I am actually going to contact him, I hear her cough a little.  And then I doubt and pause and don't make the phone call after all...

Update

I didn't call the doctor. I waited. If I call the doctor they are going to throw her on an antibiotic. I struggle every time she coughs even a little bit. Back and forth I weigh what I should do. Am I putting her in the path of harm if I don't call immediately? Am I saving her little body from an unneeded medicine? How do I know?  Will I ever "get good" at this guessing game?

At any rate, she hasn't coughed for two days now. Perhaps this time things will turn out ok.

Anna, the daily life

My wrists keep cracking and popping. The right one aches. I wondered what was going on with my wrists...  Well, I asked my knowledgeable husband what he thought of the state of my wrists. He said that it was because we stopped doing manual therapy on Anna- after 16 months of daily pounding on my daughter, my muscles are essentially atrophying and growing weak. Wow.

Anna was on an antibiotic for a month. I am still not sure that she is completely well. I hear her cough maybe two or three times a day.  Is that enough to call the doctor? Is it just allergies? Clearing her throat? If I call the doctor will they put her on an antibiotic again?

I am always worried about her eating. Is she getting enough calories? How many enzymes do I give with a meal she isn't really eating? What kind of bowel movement was that last one? How do I get her to try new foods? Did I forget to chart that diaper?  Is she chewing on those enzyme beads? The doctor says you can't chew them or you can get sores in your mouth. Why won't she take the water I am offering her to wash them down? She is so picky about eating and sometimes so uninterested that I get the kids to cheer for her whenever she takes a bite.

Today during her morning therapy with "the vest" she actually got shaken right off the couch. I looked over and she was crying, standing on the floor with the vest still shaking her little body. She was not hurt but distressed to have been vibrated right off her seat.

Oi. I just heard her cough in her sleep. That is not good. My heart sinks. Perhaps I will have to call the doctor tomorrow after all...

The Vest

At her last appointment the respiratory therapist came in the room with a tape measure and put it around Anna's chest then announced that she was big enough for "The Vest".  I was shocked. I was told that she would not get a vest until she was two or even three years old.  The therapist handed me a paper that I signed and two days letter The Vest arrived via Fed Ex in a large box that sat by the front door for another three days until a respiratory therapist from the company who makes the vest could come to my house to show me how to use it for Anna's therapy. 

The Vest System: a machine (compressor) attached to a vest which a patient wears during respiratory therapy to aid in clearing unwanted mucus out of the lungs. The vest (which looks like a life jacket) inflates and then proceeds to shake at 10hz (for 20 min.) The goal is for the shaking to cause mucus in the smaller airways to move to the larger airways where it can be more easily coughed up.

Even before her first therapy session with The Vest I had mixed feelings. I felt protective, I felt concerned, I felt anxious, I felt displaced, I felt unsure, I felt defeated- as I faced again the reality of what her life will be like as she lives cystic fibrosis...

Anna took this new step in her therapy better than I did. She let me put on the little pink vest and didn't fuss at all as the therapist adjusted it to her tiny chest. I put on one of her favorite videos and she was distracted as the vest filled up with air and squeezed her, though she looked at me a few times for reassurance. I faked my smiles.  Then it was time to push the button for it to vibrate.  It shook her whole body. Her little cheeks were shaking up and down. Her arms bounced off the sides of her body. I looked down and even her feet were shaking.  She just kept watching the video. Once or twice the hoses popped off and had to be readjusted. It looked to me like her eyes were starting to water but she never cried. She was incredible.

So, now we have The Vest. I feel like it is another member of the family or something. It will be with us forever. Maybe we should name it- Olga? Bertha? Helga? What do you think?

The Culture

Anna's cough is starting to subside. She is not coughing at night anymore and her daytime coughs are less frequent and not as hard on her body.  We are pleased.

I talked to the CF nurse today to find out what her throat culture had shown. She reported that the culture was absolutely clear of anything but the "regular flora."  Awesome. I asked again about the staph she had mentioned. She said it was a minimal amount and it was the type of staph that responds to antibiotics (there are types of staph that are resistant to antibiotics). She said that if that staph was still present it is deeper in the airways than the culture can detect.  It could show up again in the future.

So, all in all, she is on the mend from this particular episode- we hope. The one side-effect of the antibiotic that she is on is that she has terrible diarrhea- and therefore a really bad butt rash. We were advised by a nurse at the pediatrician's office to put a mixture of Desitin, A and D ointment, and Maalox on it.  Anna is being a trooper about it but I feel awful for her.