Sunday, October 19, 2014

Pediatric Pulmonology

Look at this little lady, isn't she something?!

This was at the beginning of a very looooong, SIX hour doctor appointment at the hospital. One doctor appointment! And if you know Cora, you know she was just as happy and smiley at the end of her appointment as well. We finally got in to see the pediatric pulmonologist for her respiratory issues. She's had coughing and congestion her whole life and I've always chalked it up to aspiration, which is fair because she does have it quite badly. But since having revisited that and taken all the necessary precautions since her last swallow study post op, she still has the same breathing problems. We saw the ENT and he did a nasal culture finding a Strep/Pneumo bacteria in her nose from the aspiration. After we followed the course of treatment her nasal respiratory has been clear. Last week we saw the allergist again and did a skin test of environmental elements and she tested negative for all of those. Which brought me to the head honcho - pulmonology. And boy was I sorely disappointment!

The visit was six hours. Enough said right there! The first several hours was nothing but discussion and Q&A about Cora's health starting at her prenatal care. Yep, it took us that long to discuss her history. After that long discussion I thought he would finally make this educated declaration and tell me what the problem was or what images we need to have taken. Nope. He said he doesn't know what's wrong with her and is going to treat her like she has asthma. There is no asthma testing for children under six years of age so the only solution is to treat her with a nebulizer and see if it works. That's it?!?!?! I wasted six hours of no bathroom or food breaks to hear that? I was dumbfounded and upset. He then said that he wants to get a sweat test to see if she has cystic fibrosis and that the chest x ray from September showed abnormal blood flow in the bronchial tubes likely from her ASD. I'm happy to comply with the CF test, the more tests the better. But he didn't say anything else about the bronchial tube thing......something is not right here.

So we are back to guessing games. I'd rather they do every test and image and x ray needed to rule out other diagnosis' or potential problems. I'm really frustrated that he wants to treat her for asthma, simply because he doesn't know what is wrong. True, she could have asthma and I could be totally overreacting. But I don't feel like I am. This guy is supposed to be the best and I feel like he isn't taking it as seriously as I think he should be. I understand she isn't his first priority, but she's priority enough and I spent months on the waiting list to get into his office and an additional six hours of lengthy medical history just to be shoved out the door simply because he doesn't know. Ugh....I know I have a bad attitude about this and I really want to change that attitude but I just can't shake it. I'm still frustrated about the whole thing!

Oh and the CF test results came back on the "high end of normal" so I have to go back in to have the sweat test done again and more blood work just to be absolutely certain that she does or does not have CF.


mamadonna said...

That's crazy! I would be frustrated, too. Keep after them. I can't believe all the things Cora is doing just since the reunion. That is soooooo exciting! You're a good mom!

Matt and Debbie said...

Can't you just have your blood drawn and tested for CF? If you are a carrier, then test Lance's to see if it is possible for Cora to have it?