That was a big punch in the gut....

I'm sitting here tonight at 10:00 PM, feeling like I got punched in the gut today. Kira had an appt with a pulmonogist....and to be honest, I felt like it was pretty crazy that we got the referral but I went along with it because a couple of doctors had recommended it. And because of her Congential Fiber-Type Disproption, I knew it was a good idea to rule out any problems. I honestly, seriously, 120% figured we would be in the door and back out with me saying, "That was a waste of time." Guess Mommy gut was wrong on this one?

The dr was very nice but as soon as she walked in she asked if Kira always had the dark circles under her eyes? Yes. Does she wake up saying she's tired even after 10 hours or so? Yes. Has anyone every mentioned that her left ribcage is lower than her right? Ummmm, no? When she gets a cold does she always have the croup sounding cough? Yes. Does the Albuterol with the nebulizer work? No, not really? Does she snore? Yes. Does she wake up coughing? Sometimes. Tell me more about her reflux as a baby. Tell me more about her surgeries. In the back of my mind, I don't like how the appt is going at all.

Kira was a champ. She did great for the whole appt. Not one tear or anything so I guess the anxiety meds really are making a difference but let's see how good they really are working when she has to go through sleep study with freaking electrodes all over while spending the night in the hospital. Crap. The pulm is concerned that she may not be breathing deeply enough when she sleeps which can cause too much carbon dioxide to build up and not enough oxygen...or something like that. Too be honest, I was so shocked that we had "issues" I couldn't concentrate. She also wants to rule out apnea....um, folks we've walked that road when she was an infant and finding your child blue and not breathing is not something you want to relive...EVER! So we should get a call next week to schedule it and I just hope that we can get in and get it done BEFORE school starts and I'm not going to go into the "what ifs" if something does show up with the sleep study.

We also left with an Aero Chamber....and prescriptions for Flovant and Albuterol that we are to use the minute she shows signs of a cold to see if we can keep it from lasting all winter like last year. Chances are we'll end up giving Flovant to her 2x everyday all winter if it works....more junk to load her up on. I'm trying to think of the positive because I don't want her to miss school from being sick all the time and kids with CFTD get in the cycle of getting run down, getting sick, staying run down and not getting "over it" for several months. We need to avoid that if at all possible.

I think a lot of my "shock" is from the fact that not a lot is known about CFTD yet...it's new to be able to dx it and they are learning more from kids who have it everyday. Learning is good but it's also scary when your kid is the one who has the "it" that there is so much unknown about. Before we had a dx, the "unknown" was scary because you can't fight a ghost.....but even now with a dx, we're still fighting the "unknown" in a lot of ways.

Breathing issues scare the crap out me...they terrify me. And now I know sleep is going to be hard to come by because I'm going to be keeping one ear open listening for Kira...heck, I already put a monitor in her room tonight. (It's hiding because I know she wouldn't want it there!)

But for now, I need to put on my happy face for the weekend. It's Eva's baptism and we have a houseful of people coming. Distractions are good......