October 24, 2013

Tobi Podhaler

After waiting a few weeks to receive it, the Podhaler finally arrived.

It is quite odd sounding, I think, to inhale a powdered capsule, but that's what it is.

 It is not used with the nebulizer. It is inhaled with this plastic thingy.

 It took a few minutes to figure it out, with help from a video sent by our CF clinic, but it isn't too complicated.

Amazing that this little wonder just got approved by the FDA this year. It used to take about 45 minutes to inhale the traditional Tobi by nebulizer. Tack that onto a 30 minute Vest treatment and two other nebulized medications, do all this 2-3x a day and we don't have much "day" left to do other things. I'm grateful that we have this, since fall baseball is still in full swing, and we have tournaments coming up.

October 11, 2013

Cultured Pseudomonas

Well, the first time Az cultured pseudomonas was back in 2010. At his last CF clinic, they did their usual sputum culture, and on Wednesday the nurse called to tell me that he cultured pseudomonas again. Pseudomonas Aeruginosa (or PA), can be a very aggressive bacteria in CF. It can cause further lung damage and can be difficult to eradicate. PA is one of the reasons for boiling the nebulizer cups, as it can survive normal washing. They said he has 3 colonies of it right now. Apparently, we can think of the colonies of pseudomonas like little apartments of bacteria, each one living in a different complex. How they can figure that out from a sputum culture, I have no idea. What I do know about PA, is that it can form a bio-film to protect itself against antibiotics. The good news is, they have found his PA isn't resistant against any antibiotics at this time, so that is really good news!

The normal treatment for pseudomonas is inhaled Tobramycin, or Tobi, which is an antibiotic which is inhaled. This is inhaled though the nebulizer and usually takes about 45 minutes. What a drag, right? Well, the good news in all this is that he will be able to take his inhaled Tobi with the Tobi Podhaler, which only takes about 6 minutes to inhale the powdered antibiotic. The last time Azer did Tobi, he experienced ear ringing so bad it frightened him. With this method of taking it, it decreases the risk of ear damage.

On top of the Tobi, he is going to have to do Cipro, another antibiotic on top of the one he is already taking for the Staph in his sinuses. He has already been spending a lot of time in the bathroom because of the antibiotics, so needless to say, this isn't going to help that situation much. However, the PA has to be treated aggressively. I hope we can control or eradicate it as quickly as we did last time.

October 6, 2013

10 Years!

Today marks the day when I first started raising a child with a life threatening, chronic illness. Many people, regardless of what illness it is, always say, focus on the person, not the disease. The person is separate from the disease. This is difficult to do, as a parent, because many times our children are the embodiment of our hope, our future, our fears. When you have a child with a fatal illness, it is difficult, at times, to look at them and not see the face of the disease. Each cough can be a reminder of the next medication, the next breathing treatment, the next doctor's appointment, the next meal, the next G-tube feeding. Some days it's business as usual, and some days it's overwhelming. It is heartbreaking and rewarding. It can feel like I am fighting against the waves of mucus and infection, and it can feel like we are making progress in keeping his body healthy.

Today marks the day when I started raising a child, my son. I always knew I'd  have a boy. Before he was born, I had an image in my mind that we'd be friends. Exploring nature trails, looking at bugs, catching frogs. The day he could finally walk, I'd take his hand and we'd walk as far as his little legs could manage. Taking him to the park and watching him run around was so thrilling. Watching him observe other children, learning to socialize, and make friends. Teaching him to play catch was one of our favorite activities. Being outdoors, and both of us trying to get better at catching the  ball with our gloves, and not our faces, shins, etc. I knew very early on that throwing a ball was something he couldn't live without. It has been such a joy watching him develop in baseball. His passion and motivation is always there, regardless of how he feels. He reminds me a lot of my younger self, always with a smile and ready to laugh off the days troubles and just play. I am so proud of the young man he is developing into.

Happy 1st decade birthday Azer!

October 1, 2013

Follow Up Clinic Visit

So, it's been a few weeks since he's been off of the broad spectrum antibiotic prescribed last month, and his cough has come back, and it has been productive. Surprisingly, his PFT got up to 93% Fev1. I know it can go higher, but the doctor was pretty pleased with it. He also gained a pound, which always amazes me, because he hardly eats some days.

On the sputum culture from last month, he only grew Staph again, but the doctor is realizing that it seems to be causing more symptoms than previously thought. So, he will be on a narrow spectrum antibiotic, which pretty much will treat only the staph. His chest x-ray compared to last years is actually improved. There will always be bronchiectasis, which is widening of the airways and it causes them to become flabby. So far, it is only in the upper lobes and the goal is to prevent further damage.

The doctor noticed a lot of post nasal drip, which he seems to always have. We are going to try OTC allergy medications again to see if it will clear up. The doctor wants to do a CT scan on his sinuses in a few weeks to check for nasal polyps. These are quite common in CF, and relatively easy to treat.