Monday, March 2, 2009


I haven't really posted that much because of some things in our personal lives but this morning I decided to share some thoughts that I have been having.

The biggest issue that I have right now is about pediatricians. Why is it that I have such a hard time finding a ped that has a rudimentary understanding of CF? Seriously, the last 4 peds that we have gone to have no idea what I am talking about all the time. They constantly want to go against what Luke's CF dr's want and treat like I am stupid if I don't take him off his reflux meds or cut back on his calories. No, Luke does not have reflux anymore BUT (bit but here) they help his body absorb the enzymes better. I had stopped giving him them at one point (due to info the ped told me) and his weight suffered. I didn't realize that was probably the problem until he was admitted in January and his weight rocketed in the week he was there, mainly because he was back on reflux meds. Cutting calories is just stupid for a CFer. Seriously, he needs a little storage of fat for when puberty hits (yes, I like to plan ahead).

So, we are switching back to Luke's first dr. It's actually a Family Practice Residency Program but Luke's CF dr's feel that considering they saw him when he was super sick they know all the warning signs. Also, when Luke was diagnosed his resident did some serious research into CF. She will be leaving this summer so that kinda stinks but hopefully she can impart some of her knowledge to other people. She's a great dr and I wouldn't mind following her wherever she goes :)

The other thing that has been weighing heavily on my mind is some test results that Luke had come back. Apparently his Liver enzymes are crazy high (4x's what they should be). They did an ultrasound and ran some more blood tests but everything came back somewhat normal (intersting fact- CFers have a small Gallbladder, don't really know why but the ultrasound tech freaked out about it and then the CF dr's had to tell me that is normal, kinda odd).

For right now we are waiting. We are waiting to see what happens after whatever he is sick with is out of his system. He will be getting another blood draw next Tuesday and we will know more after that blood draw. I know that some CF patients have problems with their livers but I am really hoping and praying that this is just because of the virus running through his little body.

I really don't like waiting, it's not fun but I know that through this I am going to learn a huuuuge lesson in letting go of control. I don't always have to know what is going on. I can put this one in God's hands and also in the Dr's hands and not worry about it :)

Oh, and here is a picture of what a relaxed little boy looks like while he is getting his TOBI treatment. No, the picture isn't blurry, the smoky look is actually the 'smoke' from the TOBI. It fills up the room everytime that we do it.


Deb said...

we are really, really lucky that our cf dr. lets us abuse him. we use him as our pediatrician. the only time we go to the real ped is when it is something SO totally unrelated (wart removal, tetanus shot, etc).

hope everything is okay with mr. luke's liver. keep us posted!

CFHusband said...

Tricia says it's cool to use her poem.

tammy said...

we have the same problem, i just don't listen to him lol i only change something if his CF doc says so. i feel your pain!