Monday, June 13, 2011

"Look Mom, no training wheels!"

Emily has been working on learning to ride her bike for ages. She is 5 and a half years old, will be six in September, so this might not seem like a big deal to most. After all, Ryan could ride a bike since the first time he touched one at age 3, and there are lots of other kids riding a lot earlier than Emily. But most other kids don't spend their first years tethered to oxygen, so to Emmers, this is a very big deal!

Last summer, she carted her oxygen around in a backpack most of the time, and it really limited her movements. She rode her bike often, with training wheels, often with the oxygen backpack. This summer, Emily has mostly opted to leave the oxygen inside, except for a few really hot days. We also moved next door to some little girls who spend a lot of time on their bikes outside, and Emily is eager to be one of the girls. Apparently, while Dad and Poppy were working on the deck out front the other morning, Emily infomed Poppy that she needs "those stupid training wheels" taken off. Well, he took them off and Emily tossed them in the trash for good measure. Emmers started riding the same day! She is so proud of herself!

Health-wise, Emily remains the same. They started her on Theophylline a few weeks ago to see if it might help with some of the shortness of breath, and the only difference we see so far is that she doesn't seem as swollen as she has. Her weight 2 weeks ago was 64 pounds, and this morning, that was down to 57. Of course, that can all change overnight with Emily, so we're not making much out of that. As for whether the medicine is helping or not, I really don't know. She still seems to pant and takes multiple breaths during each sentence, especially if she is doing something while talking. And the heat is really getting to her! A few days, she has chosen to spend hours at a time sleeping with her oxygen on. Then there have been other times when she has been extremely active, even for Emily, and she has spent a lot of time outdoors the last month or so, so maybe the medicine has had something to do with that!

All in all, Emily remains very well, and we feel very fortunate for that. Her PFT's are pretty good, and she remains stable in the problems she does have. Her breathlessness is not improving, but it is not getting worse either, so we can live with that. It has been over 2 years since she has been hospitalized. She is developing normally and for the most part seems to be a normal 5 year old. We feel so lucky and so eternally grateful for all that her doctors have done to help her over the years!

That said, we do still have our concerns, and so much about Emily doesn't always seem "normal" to us. A lot of it, we choose to ignore, and we have gotten pretty good at "tuning out" her breathlessness. If it doesn't affect her, or if it isn't something that we can change, then why should we worry about it? Still, we are left with questions.

One such question: I walked into Emily's room a few weeks ago and found her sleeping without oxygen, and her neck veins were jumping. I hooked her to the pulse oximeter, and SAT's were fine even without oxygen, but it just looked so odd. I turned on the Oxygen and this stopped. Pulse rate also decreased 30 points with oxygen. I took a short video to demonstrate what I am talking about. So I guess my question is, is this normal? Do you other ILD moms see this in your kiddos? In your healthy kids? My healthy kids do not do this, and Emily does not do this with her oxygen on, but she does when she is sleeping without it. Is this something I should even be concerned about? Is this just another example of Emily's body trying to compensate for her lungs, or is this a case of Mom paying too much attention? What do you all think?

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