March 6, 2014

Azer putting in a new Mic-key button

Azer has been getting better about recognizing when the balloon may be getting a little low on water. I noticed he has way less anxiety about pulling out the button if he does it himself, since only he knows how it really feels. I am really proud of him for being able to do so much on his own! 

Here is a picture of the Mic-key button with the balloon filled with water. That is what holds the button inside the stomach wall. We usually replace the button about every 6 months.

February 14, 2014

Clinic day!

Yesterday, Azer had his first fasting and glucose test. I learned that they start doing these annually after they turn 10 years old. He wasn't the happiest about having to fast all night and not getting his morning feed. However, his blood sugar was completely normal fasting. They then had him drink a very sugary liquid, and then tested his blood two hours later, and again it was normal.

He was down about two pounds yesterday. The dietitian was kind of concerned, but I really think it had something to do with not getting his night and morning feed. He tends to hold a lot of liquid in his stomach. On the plus side, as of late, he actually has had an appetite. That is going from having nearly no appetite, ever. The only exception to that is when he is on Prednisone, which nobody wants.

He scored 94% Fev1 on his PFT's yesterday. He had great air intake, despite having a mildly wet cough. The doctor said he sounded very clear. As usual, the doctor said he has the cleanest G-tube stoma he has ever seen. That's always funny because he keeps his button so clean, but it is a constant struggle to keep his room clean. Boys are strange I guess!

After clinic, we had our obligatory lunch together. Azer chose Subway. The kid ate nearly an entire foot long meatball sub. Very impressive!

After which, he was very energetic. So, yay for a good clinic day!

December 26, 2013

No Psuedo!

So, the sputum culture from our last clinic came back clear of Pseudomonas! Yay! I called the clinic last week to ask them if they wanted us to do another round of Tobi, but they said nope! They will test for Pseudomonas again when we have clinic in a few months. But, thank God we cleared it out!

November 14, 2013

Clinic Day

Well, it was a long day, but it turned out well. Early in the morning, Azer got the CT scan off his sinuses to check for nasal polyps. The machine he used was brand-new, so he was the very first person to try it out!

The CT scan revealed there are no visible polyps, and just typical CF mucus thickening. So, that's a relief!

He managed to gain 3 lbs in a month. The Tobi isn't supposed to make you hungrier, but oddly he has had a bit more of an appetite lately. His FEV1 was 92%, which is around his normal baseline. His lungs sounded clear, and overall, the doctor was quite pleased. We haven't received the results of his culture yet, but the doctor said that the colonies of pseudomonas aren't resistant to antibiotics, so there is hope for possible eradication of it.

I wanted to share a little information I was reading recently on another CF mom's page.

This article in the CFWA RED Magazine, summer edition, lists several studies done and have found the Vest to be much less effective than Positive Airway clearance methods.

Here is a segment of the article.

"Another study in Thorax by Osman et al 2010 compared the Vest to the usual airway clearance techniques (such as Flutter, PEP, active cycle of breathing technique, autogenic drainage) performed by the participants. This was a short term study, and looked at sputum production during the physio session and for 24 hours after using either the Vest, or the participant's usual technique. When participants used the Vest they produced less sputum in both the physio session and the w24 hours afterwards. The majority (55%) of participants also said they preferred their usual technique over the Vest. in fact, the only time the Vest has shown promise in CF studies is when it is compared to percussion and Postural Drainage - a technique that is now outdated and no longer used (Bradley 2010)

There may be a couple of reasons why the Vest is not as effective as other physiotherapy techniques for CF. One is that it provides no positive airways pressure, which helps to splint floppy airways open to allow sputum to travel from the small airways up into the larger airways, where it can be coughed up. If you have damaged, floppy airways, and they are not being splinted open by positive pressure during chest physio, they can close down and trap sputum deep in the lungs.
Positive airways Pressure also helps to get air behind trapped sputum, forcing it out of the small airways. Positive Airways Pressure techniques include PEP (including Bubble PEP), Flutter, and Acapella - but can be produced whenever you blow out against resistance (blowing out under water, blowing up balloons, blowing through pursed lips). The Vest may also not be as effective because it is a passive technique. Whenever you have to blow out against resistance, or use techniques like ACBT or autogenic drainage to control your breathing, you engage and strengthen your muscles of breathing - it's a workout for the muscles that help your lungs work! you can't get this with the Vest."

I have always felt that the Vest hasn't been as effective for Azer has Chest Percussion Therapy. While I am not considering eliminating the Vest from our treatments, I will be throwing in more CPT sessions along with using the Acapella. After a few days of using the Acapella in addition to his normal breathing treatment routine, I have heard a difference in his cough, and he says his lungs feel clearer. Just another weapon in the arsenal!

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.