Thursday, July 18, 2013

pulm appt (Ellie)

Ellie had her pulm appt today and for the 1st we saw him down in the pulm clinic, not as part of her comprehensive team. She had a PFT, and we talked about her meds, (Ellie fighting against neb treatments) and food allergies.

Funny was how Ellie responded to her dr telling her the importance and saying if needed another appt can be to show her how to do a breathing treatment, remind her the importance, and why not to argue back. If looks could kill... (giggles) she clearly let Dr. C. know she knew all these things and another appt just for this was not needed (or wanted).

The only change we are to make at this point is to use vibrating apparatus once daily regardless, then when coming down with or is sick to use her vibrating apparatus with every breathing treatment like we had been. Using her accapella vibrator daily will be the biggest change as she does not her (snake breath) or vibrating lung device because she has to cough. Sometimes this brings gobs of goop from her lungs.

LOL between Dr A and Dr C they have helped to make sure we know which of the children's hospitals are best across the US. Letting Dr. . know today that we will be sticking to the main interstates and that we already know where the major hospitals and the children's hospitals are, seemed to calm his mind and let him know we have planned ahead.

YAY!! All the John Hopkins dr's have given the go ahead for this long trip and yes we have their numbers in case they need to any of the dr's as we are traveling.