Isn’t it crazy how things can go from completely boring to having me in panic mode. I just got a call back from Arianna’s pediatrician and she received a response back from the pulmonologist regarding Arianna. He wants to have a CT of her lungs and heart along with a bronchoscopy (scope of her lungs) before April 8th appointment. So…here I am freaking out once again that she has to go under general anesthetia. Why can’t things stay calm for more than a week. We won’t know when these tests will be done, but we know they will all be done at the same time. When we were at the peds office last week I told her I did notice a slight change in Arianna’s energy and eating habits since being off the O2. She mentioned this to the pulmo and he suggested putting her back on 1-1.5 liters of O2 at night. But of course since we’ve seen the peds last week Arianna’s eating and energy has seemed to get a lot better. So basically its up to me, if I feel she is having a sluggish day then I am to put her on O2 at night. I have been checking her sats every other day and she remains in the mid-high 90’s which is right where she needs to be.
So my feelings right now…well I guess I’m wondering why they still want to do the CT and scope since she is doing so well. But then again I know there could possibly be something going on that we cannot see on the outside. We still don’t know why she went into respiratory distress and was hospitalized, requiring her to be on oxygen for 3 weeks. Its just so hard to put your child through something like this when they are doing so well.
3 comments:
I don't think any of them know. Isaac's still on his O2...and it's been over a month now. Go figure?? But, I have noticed that he acts different when his sats get below 94 (not the 92 that the pulmonologist said to stay above...and our card just said to stay above 90). So...I just might keep Isaac on it FOREVER...because he eats better (well..good for him), he has more energy...he just seems happier.
BUT...he's not mobile like Arianna...
I'm sorry she has to have all these tests...but, better to knock them out...get results that are ALL NEGATIVE...and cross it off the list!!! (us and our lists!)
Hope you have a fun week without thinking of the impending tests!
Kathy
Yeah, it stinks that they want her to endure more tests, but it might be good to get them out of the way. It's good to rule things out. Although, I totally see where you're coming from. You never want to put your kid through unnecessary stress. Elijah had a bronchoscopy last summer because we couldn't figure out why he was wheezing so much. We found NOTHING, thank God, but it was good to know that it was nothing.
Take some time for yourself, if you can! Staying home with a little one is hard work (I know that because my husband gets crabby on the days he stays home with the baby :). Can your hubby watch Arianna for a bit while you get out of the house? We are definitely going to Vegas this summer! :)
Try not to worry to much (ha, much easier said than done, right?). Take care!! Sending you lots of hugs.
More tests, wow, rough on baby, rougher on mommy. The only consolation is that hopefully you'll find an explanation for her symptoms when she was admitted. Ideally something that can be treated, to prevent a reoccurence, or even better, find nothing, and maybe it can boil down to some obscure sporadic virus that they couldn't test for, and that she won't get again. Bottom line, kids will get sick, and kids will get better. I know it is harder since Arianna has a leaky pulmonary valve, but she's been pretty tough so far, you've got to admit. I'll be keeping her in my thoughts as sh gets all the tests knocked out in one go.
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