Tuesday, October 5, 2010

And there is no night two....

Emily did pretty well last night sleeping without her oxygen.

That is unless you count the twitching and jerking all night long. I don't think she rested very well, which is pretty typical of what she does without oxygen. I really wish I had a better understanding of why, but I don't. But anyway, her sats stayed up (93-98, mostly in the 94-96 range), and she never really appeared to be in any acute distress.

This morning she got up for school without problem, got dressed, and I even asked her how her breathing was. "My breathing is pretty soft," was her reply. "Soft" meaning the opposite of hard which is how she describes it when her breathing gets bad. Respiratory rate was mid 30's, so I sent her off to school where she remained for 5 hours.

At 12:20, she returned home. Crying screaming tantrum girl had taken over! Spent the next hour listening to her wail because she wanted milk, I put it in the wrong cup, Braylon was looking at her funny, Ashton was supposed to be at school (he was home sick today), she didn't want to stay with Aunt Bridget (I had an eye appointment), that I am HER Mommy and it isn't fair that she never gets me to herself. And then she admitted it, "My head hurts, my belly hurts, I feel too tired, and I need my oxygen." I think pic below says it all!

I carried her back upstairs with her little arms clinging around my neck, checked her sat, and it was 97% (very good), but her heart and respiratory rates were up
(170's and upper 50's), so we put the oxygen on. She cuddled up on her bed for only about a half hour with her cat and favorite doll, and she was happier almost immediately. Then Bridget came over with Daisy and Lilly, so the oxygen was off again.

I did take her to cheerleading tonight, which went better than last time. She cheered for about 5 minutes, then stopped and pouted on the ground. She cried most of the way home and fell asleep right after supper.

I went ahead and put her oxygen on her tonight, and she looks much more peaceful. Her respiratory rate is 22 breaths per minute, her pulse is 82, and her oxygen saturation is 98% on 1/2 liter oxygen. And none of that twitching jerking stuff, she's out like a light!

I wish I had a better understanding of the physiology of what is going on with her and why she can keep her sats up without oxygen, but at the expense of everything else. If you recall, during the time Emily was off oxygen at age 3, she barely spoke at all, was weak, tired all the time, vomited multiple times day and night every single day, and was just not well. That and she practically lived with "pneumonia." A little oxygen turned all that around for her, and while I would like it if she could get rid of it, I just don't know when or if that will ever happen for her.

So our little oxygen weaning experience has failed yet again, this time even quicker than the last. But last time, she spent several hours wailing, and I didn't want to push her that far again...not sure my ears could have standed that! At least we did try, and now I know what to tell the doctor on Monday when he asks.


  1. As a former respiratory therapist, I can offer an opinion on why Emily really needs that little bit of oxygen.

    You put your finger on it when you noted that, although her sats stayed in the mid-90's, her heart rate went up to the 170's and her respiratory rate went to the 50's.

    Her lungs can't absorb enough oxygen from room air to meet her body's needs, so her brain tells her heart to beat faster (move the blood that has less oxygen than needed around the body faster, and get it back to the lungs to pick up some more), and her respiratory rate goes up for the same reason.

    The human body cannot be fooled; if its needs can't be met in the normal way, it tries to compensate however it can, in order to keep all systems operating at their best efficiency.

    So Emily's little body is doing its best to take care of her however it can, when it doesn't have the oxygen on.

    Laurel Shand,
    (55, PCD/heterotaxy, South Carolina)

  2. Laurel,

    Thank you so much for your insight! That is pretty much how it has always been for Emily. When she is off oxygen, the pulse and the respiratory rates go way up, especially after several hours. This gets confusing for doctors because I can bring her in their office in the morning without oxygen, and she'll look pretty good, but then there I am complaining about her shortness of breath that she has day after day. Sometimes I am positive that they think I'm nuts! Thankfully the pulmonologist we have now is very understanding and does seem to hear what I'm saying. Other doctors still tend to brush her off though, as she "looks so normal."

    Emily's father and I can tell by the sound of her voice and by her behavior whether or not she is needing oxygen, but because her sats do not always indicate there is a problem (even though her heart and respiratory rates increase), a lot of people in the medical community do not agree. And then there I am, doubting myself. Maybe she doesn't really need it after all. After all, the doctor doesn't think she does, and maybe if we just ignore the heart and respiratory rates, they'll come back down. That is what I want the outcome to be so badly, and when doctors see her as a normal kid, it makes me wonder if maybe I've been wrong all this time and we are putting her through this for nothing. So then we try to wean again and again, and we always come down to Emily screaming her little head off til we can't take it anymore! And oxygen always silences her tears, and she usually falls fast asleep as soon as the air starts blowing through the cannula. You can watch the relief come over her face. That tells us something in itself!

    Thanks again for your comment! It's always good to hear from someone knowledgeable on the subject that what we are seeing is really what we are seeing! (Hope that made sense)

    Amanda (Emily's Mom)