Friday, March 11, 2011

March 2011

Emily's cardiology appointment went well. Other than the little PFO that she has always had, they did not find anything out of the ordinary from a heart standpoint. The PFO is not causing her issues, and they don't reccomend fixing it. They say we should bring her back in a few years just to make sure everything remains stable, but they do not forsee any problems with her heart.

The heart doctor said basically that Emily is out of breath because of her lungs, and any swelling is probably also caused because of her lungs during exacerbations. So as she has always been, I guess. We can deal with that, but it is just frustrating when we go to doctors and have them tell us how great she is, when anyone in their right mind can look at her and see that she doesn't breathe normally at all. What I took away from the pulmonology appointment was that Emily's pulmonary function was pretty much normal, and there is no pulmonary reason for her to be the way she is anymore, so it had to be something else. When they said we should see the heart doctor again, I almost had some hope that it would be the stupid PFO, they could fix it, and she could get on with her life. No such luck.

Maybe I misunderstood at the pulm appointment, but I am getting really tired of everyone telling me she is fixed when she isn't! She's better, yes, a whole lot better than she was as a baby, but she is not fixed. If they can't fix her, I want them to stop giving me false hope and just let her life as she is. She does okay as long as she has her extra oxygen at night and her inhalers, and steroids when she is sick. But if they can fix her, then I want her fixed! I just wish I knew how to express this to the doctors!

Part of me is longing for the old days with our old pulmonologist. I didn't like him because I felt like he didn't listen to us, but up until she was about 2.5, I felt like he always acted in her best interest and honestly was the only doctor I trusted with her life. He always knew the right thing to do. Emily survived the sickest times of her life, and I know he had a huge part in that! I couldn't have kept her going back then without his input, and for that, I am forever grateful!

Of course after the crying I did in his office right after I had Braylon, I don't feel comfortable continuing to see him, and I don't feel he has any respect left for us. Then very next run-in, he declared Emily to be cured and stopped her oxygen....and you see how well that worked out for her. And then very next run-in, Braylon was in the hospital, I had to push some residents around to get Braylon properly cared for (and yes, I am THAT mom, and I will do it again in a heart-beat, you don't mess with MY baby!), so he was angry with me about that, and we had words that resulted in my breaking down into tears yet again. Soooo.....that really isn't an option for us. We see the other doctor, who I LIKE very much. But liking isn't everything....I just want her taken care of. That is the most important thing, and I will cry, beg, scream, fight, do whatever I have to do to make that happen!


Okay, rant over.

So here's the thing....she is sick again, gagging, coughing, wheezing. Inhalers are keeping her going, but not well enough. It is her asthma acting up, and I pray that she improves quickly on her own, without steroids! The boys all have something similar right now too.

I am getting ready to take Ashton to the doctor in a few minutes for something else entirely, what appears to be a broken finger (thank you wrestling practice). The boys are wrestling in the Indiana Folkstyle State Finals tomorrow, so we have to find a good solution for that finger, so that it can be stable, but he can still wrestle. He is already registered, and he has his heart set on Nationals this he needs to go to State to qualify.

Emily is sitting this State Finals out. We're hoping to get her back on the mat in time to qualify for Freestyle State.

Saturday, March 5, 2011

Emily's "Lucky Bear"

Emily's cardiology appointment is on Monday, and I would be lying if I said I wasn't nervous. But we've been down this path before, and other than a minor heart defect (PFO), they have never found anything. I guess we will see if anything turns up this time. Obviously, something isn't exactly "normal" with her, and we are hoping for answers, and an easy fix would be great news too. Fingers crossed, but hopes are not up.

Then next weekend is the folkstyle state finals. Emily qualified a few weeks ago, but I don't think she will be competing at State. Maybe next month at the freestyle finals, but I just don't think she is up for it right now.

This picture below is of Emily all dressed out for wrestling in Jeffersonville a few weeks ago. I went to take her picture, and she pulled this little bear out of her bag...stated it was her "lucky bear." In fact, this bear has been with her from the very beginning, lying next to her in the ICU during her worst days as a baby (other picture). A lucky bear indeed!

This bear has been through so much with Emily, and I was surprised to see she still has it! Maybe we should bring it along on Monday for luck!! Couldn't hurt!