Friday, June 17, 2011

Long update.....PART 5

Okay, now for what many of you have been waiting for...the Doctor POST :)

After about 3 weeks of being in Arizona, Joshua got a letter (in Hawaii) stating what was needed in order for the boys to get a visit to the Cystic Fibrosis Clinic in Arizona approved.  On that wonderful little letter, there was a contact person and Praise God, a phone number too.  At a last ditch effort to get this ridiculous situation figured out, I figured I might as well call that number and see if they could help me with the referral.

I called that number and got a little bit of a run around, but when I got to explain my whole entire situation, they put me through to the person that was organizing the actual referral for both boys.  I told her all the troubles I was having.  She took it upon herself to call all 4 of the doctor's offices involved, to get the correct paper work in and get the ball rolling.  About 3 days prior to our planned date of returning to Hawaii, we got the referral...WOOT WOOT.

As expected, there were no appointments available in the 3 days we had left during our visit.  Praise God, we were able to change our flight dates and Praise God, that I was not too desperate to go home and in fact got to do a few things in Arizona that I thought I would miss out on!!!!!

Upon arriving at the doctor's appointment, it was so wonderful to be greeted by our favorite CF Nurse.  It is such a blessing to have a nurse who worries about us and cares about us and allows us to give her hugs after all of the arduous work we ensued getting this appointment underway!!!

All of the hospital workers were quite enthralled with my handsome young men.  Ethan made sure that Caleb remembered all the do's and don'ts of the hospital.  He made Caleb put his hands in his pocket whenever we left our little room (so as not to touch germs and not get sick.)  I had planned for a whole day of hanging out in this room, as our favorite nurse basically squeezed us into two appointment spots that were two hours apart.  Amazingly enough, we seemed to have no more than 5 or 10 minutes between the many people we saw. 

Okay here is the down low on what we went over...

Ethan's Pulmonary Function Tests (PFTs) were not really where they would have liked him to be.  We are assuming/hoping that it was because of him just getting over a cold.  We will be heading into Oahu, at the end of June, to do the PFTs again and see if his results are better then.

Caleb actually got to do PFTs for the first time at this visit.  I don't think he had a clue what he was doing.  But the more practice the better.  I will try to get a video of Ethan doing them in June, so all the internet world can see him blowing and working his lungs like mad.

We talked about options with Ethan's bowels not being the best.  Option 1 was switch from Creon to Pancreaze (both pancreatic enzymes.)  Option 2 was do a fecal elastase test (collect his poop for 3 days) and see if he just needs a higher dose of enzymes.  Option 3 try adding sodium bicarbonate to his enzymes and see if that helps his enzymes get past his stomach and into his small intestines so they can do their job.  The doc wanted to try option 1 first.  I was all for shooting right to option 3, as it has a few benefits beyond lowering acid in the stomach. 

Both boys weights were pretty good.  Caleb was just a little below the 50th percentile and they would like him to be above the 50th percentile.  Ethan was in the 10th percentile, which is where he always hovers.  Not low enough for a g-tube to be mentioned, so we are happy about that.  We did talk about the need for a feeding therapist to help Ethan with some of his chewing and swallowing issues.  That process has begun for a referral.  We will see how long it will take to get that approved ;) 

We talked about the boys reaction to the higher humidity and heat of Hawaii.  They, especially Ethan, turn bright red, lose energy quickly and sometimes even get sick to their stomachs.  The problem is that they lose salt so quickly in the heat.  We try to pump them full of electrolyte water, but it is just not doing what we need it to do.  The doc said that a salt pill would be an option.  We were able to talk to our pharmacist here in Hawaii and she had the perfect thing for us...Thermotabs.  We have tried them about 3 times and so far they seem to have worked great.  The boys only take 1/4 of a tablet. 

The clinic visits always end on a yucky note, with a throat culture to check for any nasty bacterias the lungs might be housing.  At just the time our favorite nurse brought out the giant swab, Ethan had a pretty good coughing spell (left over cough from being sick) and thus got up some good gunk.  This was perfect timing, as it would give a pretty good reading as to what was in his lungs.  Caleb does not like the giant swab thingy, but after being upset for a second, he opened his mouth up for our favorite nurse and got it over quick. 

I always fear calling up to find out what the throat culture results are.  Although I do just about everything in my power to keep these kids HEALTHY, not everything is in my power and there are some pretty slippery and nasty bacterias that love the environment of CF lungs.   Well, there was nothing to fear.   Caleb came back with completely NORMAL FLORA and Ethan came back with a scant amount of STAPH A (no big deal!)

There you go, that is the end.  We went for some McD's after the appointment, and headed back to Nana and Opa's house.  That night, we had dinner with my mom, Nana and Opa for the last time of our trip.  The next day, we headed back to Hawaii and thankfully experienced a very uneventful flight.

1 comment:

  1. Missa,
    Hi! My name is Laura McPeak. I am a CF'er in Arizona and me and my husband are actually contemplating moving to Hawaii. Would you be able to talk with me at all about your experience with CF and Hawaii? Do you have a FB or something? I was lead to your blog on the forums so I hope its ok that I contacted you. If you would wish to, you can find me on Facebook!
    P.S. Glad to hear of your good news of the approval in your most recent post! God takes care of us doesn't he!

    Hope to talk to you soon!
    Laura McPeak