Saturday, May 29, 2010

WHEW..what a week Part Two

Wednesday - the boys' first appointment was at 9am. So we woke up early and still struggled to get things done. We ended up skipping Caleb's vest and breathing treatment. We checked out of our hotel around 8:15 and headed out to the pediatric pulmonologist. First things first...the boys got weighed, measured, blood pressured and checked for oxygen levels. Ethan is in the 15% (following his own little curve) and Caleb is in the 50% I am struggling to describe the pulmonologist we met this day!!!! His first question was why do you have 2 boys with CF and you are not living on the mainland? I am always trying to get my patients with CF to leave here and move to the mainland and you actually moved here. He didn't even give us time to really answer and just moved on from there. He asked why the boys were taking things like magnesium and taurine and as I tried to explain, he said you are into all that alternative stuff aren't you,it's all just hogwash. He asked genetic information and when we came to talking about Caleb, he asked if we did prenatal testing, we replied quickly with a no. He proceeded to ask why not and as I said, we knew we wanted Caleb whether he had CF or not, he was onto his next question. I started telling him some of the issues we were having with getting on Medicaid and he said I don't deal with that stuff, you will have to find someone else with that kind of info. We appeared to have found a man that is very sure of his info and while I am a straight forward person myself, I could see there was no discussing stuff that he was SO...... opinionated on. He said the boys sounded great though. He did a throat culture to see if the boys are growing any bad bugs in their lungs. We suspect Ethan may be growing something, as he has been having a little bit of a congested cough. Prayers would be appreciated, that both boys are completely clear of any bugs!!! Now onto the Gastroenterologist. The appointment was at 1 pm, which is usually really good, because that means we are the first appointment after lunch. Well we ended up being there until 3:30pm and a lot of that involved waiting around for the doctor...UGH!!!! One of the first things the Doctor said was that they really recommend patients with CF to be close to a Cystic Fibrosis Clinic. Well that is not going to happen here in Hawaii, but we will continue to be in contact with the clinic in Phoenix and perhaps have a clinic visit when we come in to town. He was very helpful though. The digestive enzymes the boys are on right now are no longer approved by the FDA and thus they can no longer be prescribed. So, the doctor tried to help us figure out the enzymes that would be the most cost effective, the most effective on their digestive systems and that our insurance company would approve. He seemed very knowledgeable and very willing to help us in any manner possible. YEAH!!! We hung out in Honolulu for a while after the appointment and found a Wendy's for a quick dinner before our flight home. Ethan's quote of the day..."Mom, Wendy's makes potatoes much better than you do:)" Parking for Wednesday.....$10


  1. And, I'm having a hard time reading your description of that doctor! Wow! You are a much stronger woman than I-- I would have left crying!

    Glad the boys are doing well.... and glad your gastroenterologist was so helpful! Will continue to pray for their health...

  2. When I was growing up, my mom really struggled with our doctor. She was a very knowledgable woman, but also very OPINIONATED and she often made fun of the way my mom was into "alternative" methods. Once, during a conversation about some herbs my sister and I were taking, our doctor asked "So, what do you do when your girls get sick? Just send them out to graze?"
    I understand the frustration of having your medical team question the things you do. Hopefully as you get to know this doctor better, he will understand (or at least accept) that you do things "differently", and that it's not a bad thing.
    Over the years, that particular doctor became easier to deal with, and we really started to like her, despite our different opinions. Although she never FULLY understood our "alternative" methods, during my very last appointment at the children's center (I was 19) the nurse coordinator was questioning some of my natural remedies and my doctor cut her off by saying "We've learned to just let her do WHATEVER it is she chooses to do. You don't argue with this girl because obviously SOMETHING is working."
    Also, I don't know that "alternative" is the best term. For me, anyway, the natural remedies aren't an ALTERNATIVE to medicine. They are simply things I do in ADDITION tothe things I am prescribed...

  3. Gosh..... I just want to cry!!! I am sick right now. UGH!!! We moved to Hawaii and lived there for 2.5 years. We live on Oahu, in Ewa Beach. My heart dropped when I just saw your pictures and your description of the doctor. UGH!

    I know all to well you are going through. He is a freakin QUACK!!! Sorry, I hope not to offend. But he quoted us data that was 30 years old, and we went through a very similar, ridiculous appt. We got home and called our pulminologist and they quickly conferred on the phone. Our pulminologist from California quickly called me back and asked me what alternative dr. we could go and see, and told us to go to a different dr.

    We quickly got out of HMSA system and went straight to the Kaiser system. We liked the dr. in that system, he seemed okay enough. But the lack of CF clinic finally got the best of us, and we moved back this last December.

    Gosh I miss Hawaii so much though and so does the entire family. Oh and we homeschooled as well!!! Aryia our daughter with CF did so amazing there with the hot/humid/salty air! We threw her in the ocean as much as possibly for nature saline therapy.

    I read your struggles on insurance and co-pays and I wanted to let you know that we did in fact switch her to the state health care and we had Kaiser and it worked very well.

    Take care!