20 October 2013

CF Clinic and Annual Chest X-ray

Last week, Bennett had his 3-month regular check up with the Cystic Fibrosis clinic at Children's Medical Center in Dallas. It was also time for his annual chest X-ray.

Can I just take a few minutes to say how incredibly proud I am of him? That child has to go through so much and he handles it with such bravery!

Bennett has done a chest x-ray several times so he's pretty used to it.  But this time, since I had Avonlea and Oliver with me, I had to step out of the X-ray room during the X-ray.  My heart was a little nervous to leave him in the room with strangers all by himself.  But he did so great.

I tried to act like I wasn't worried about him.  And he mirrored my confidence by showing I had nothing to worry about!  Before I closed the door to the X-ray room, I reminded him: "don't forget - when they take the picture, make sure to tell your lungs to smile" :)

While we don't know the results of the chest X-ray or his regular throat culture, Bennett's CF doctor decided to increase the antibiotics he is currently on for a sinus infection.  In addition, she has decided to start Bennett on Tobi.  

Tobi is the nickname for Tobraycin, an inhaled antibiotic medication used to treat pseudomonas aeruginosa, a damaging bacteria often found in CF lungs (btw, just for the record, pseudomonas is not something healthy people need to be concerned about "catching"; it is not something that is a threat to healthy people - only those with Cystic Fibrosis or a compromised immune system).

Avonlea joins Bennett (and his dog) on the couch while he watches TV during his early morning treatments.

I knew we would one day begin treating pseudomonas but I wasn't quite ready to start just quite yet.  Typically, with Cystic Fibrosis, once you begin treating an infection, you will continue to treat it for the rest of their life.

I knew, when the doctor casually but carefully mentioned wanting to begin Tobi, what she was saying.

I asked, "Tobi?  So you want to treat Bennett for pseudomonas?  So, you think he may have pseudomonas?"
The doctor carefully nodded and explained, "he has never cultured it.  And I'm not so convinced he has it that I think he should do Tobi twice a day, which is the typical dose.  But I want to make sure that's not what he's dealing with so I suggest we begin it once daily."

So, once the medicine arrives at our door, Bennett's nighttime routine will increase each night from 20 minutes to 30 minutes daily.  

I'm disappointed, not just because his CF routine is being lengthen but because I am reminded once more that this is a progressive disease that won't go away.  Our only hope at this point is to manage it.  It is moments like this these that push me out of denial and force me to be present with the fact that we have an awful disease working against us.

Pseudomonas aeruginosa (PA) is not necessarily a death sentence.  But it is one of the primary lung infections that slowly causes damage in the lungs.  PA, if not well controlled, can be very damaging over time.  Bennett's own CF doctor helped write this article on PA, which explains that "Chronic infection with P. aeruginosa is the main proven perpetrator of lung function decline and ultimate mortality in CF patients."

I wouldn't be fully honest if I didn't say that there is a part of me that feels really sad for our little boy.  PA is common in the CF world.  It's "normal" for those of us with CF children.  But it doesn't make it any less disappointing to hear we must begin treating it.

But, thankfully, we have a very smart and vigilant doctor who will diligently work to help Bennett's lungs survive any potential of damage as we wait for a cure for Cystic Fibrosis.  And just as wonderful, our little guy feels healthy and has no idea of this tiny but very significant change in his CF care.

Overall, he is doing *really* well with regards to his health.  

This is a picture I had to make sure I grabbed.  I don't typically bring all three children by myself to Dallas for our CF Clinic appointments, especially in the pouring rain.  However, when you have one child who can't go to school yet, one child who has an appointment and another child who is sick, you have no choice but to bring them all! :)  As soon as we got in to our appointment, I put Avonlea up on the table to let her stretch out.  The boys couldn't get to her fast enough.  They loooooove her!!!

Once I could get their attention again, I asked the boys to smile for the camera. I cracked up when I saw this picture. Apparently, when I asked the boys to smile, Bennett immediately (but for no reason) took his banana and stuck it directly to Avonlea's head. :)

By the way, Bennett is holding stickers the nurse gave him for doing so well when she took his vitals (every CF Clinic appointment begins with a weigh-in, taking of blood pressure and an oximeter reading).

This is a picture from Bennett's 4 year old check up at his Pediatrician's office during his hearing screening the day after our CF Clinic visit.   I was just so proud of him sitting in the chair at the doctor's office.  He feels a lot of pride when he pleases the nurses with his independence.  This picture was when Bennett made the nurse laugh because every time he would hear a "beep" in his ear, instead of pointing to the ear he heard it in (like the nurse originally requested he do), he would take the giraffe's hoof and point to the correct ear.  Such a sweet and tenderhearted babe he still is.

For documentation's sake, I'll mention that we are going to change Bennett's g-tube night feeding from using Elecare formula (30 calories per oz) to using Peptide formula (45 calories per oz).  This will hopefully help bump up Bennett's weight and keep him healthier.  He is currently in the 50th percentile for height but 30th percentile for weight.  We know studies have shown that keeping CFer's weight in the 50th percentile is linked to better lung function and, therefore, a longer life expectancy.  We'll see how it works for him!

1 comment :

  1. Sorry about the TOBI, that's such a stinker! My son cultured it when he was 2, he did 2 months of 2X per day and then we've been doing every other month since then (along with Zithromycin) although we haven't gotten rid of the pseudo yet. TOBI months around here are the worst, 5 nebulizers a day. Plus the TOBI takes FOREVER to finish, usually 30 minutes for one vial for us so it can get pretty rough. We were realllly bummed when we found out he was culturing it so I'm sure you must be too :( I hope all your future throat cultures come back negative!


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