Saturday, August 20, 2016

1 Month Post-Op

Aberdeen is one month post-op today, and since I couldn't get it together enough to do an in-depth birthday post, I thought I would provide a few more updates as we celebrate this milestone and deal with some difficult developments. 

Abby weighed in at 22lbs and was 31.5in long at her cardiology follow-up on Thursday. Her local cardiologist was thrilled with how well she was doing and so happy to have this myectomy done and successfully out of the way - he made sure that we understood that overall, her heart is still very thick, but that her obstruction is so much improved that her gradient could be considered normal. NORMAL! 

Abby's mood has been steadily improving the further we put the hospital behind us. We are able to get her down for a nap and bedtime again without a gigantic meltdown, and she's warming up to her therapy sessions more quickly each time. She still wants NOTHING to do with medical appointments and her intense reactions to minor things (like vitals) has me run pretty ragged. I hate that she's been through so much and that it's continuing to impact her in a way it didn't when she was an infant. I just want to give her a break.

But breaks we do not get, because if it's not one thing, then it's another - this time her lungs.

After Abby's cardiologist appointment, we had a routine chest X-Ray done, as requested by pulmonology. Results were "highly abnormal" - terms we're used to hearing, but not in reference to her lungs. Apparently there is indication of chronic airway disease, possibly due to aspiration. We don't really know if Abby aspirates, because she doesn't swallow enough to do a modified barium swallow study, which would diagnose such an issue, but there was enough gunk apparent on her X-Ray to make her pulmonologist (who is new to us) very concerned. He immediately ordered up all sorts of breathing treatments, including nebs and CPT (a technique used to break up mucous and fight atelectasis by banging on her back with a cup thing), at which point I had a big old breakdown in the doctor's office. I don't think I've cried like that at an appointment ever, and only very few times even inpatient. It's just too much right now. I feel like we just got over a huge hurdle only to run into a brick wall. I don't know why, with the 10,000,000 chest X-Rays Abby has had in the last month, NOBODY else has mentioned anything like this, and I don't know how her lungs could be in THAT bad of shape with zero clinical indicators. So frustrating. I agreed to the at-home CPT, since Abby doesn't mind it, but I could not bring myself to make her do a bunch of nebulizer treatments right now. We'll do another chest X-Ray in a couple of weeks and see how things look. Maybe by then, she'll be more receptive to the nebs and I'll be in a better place emotionally. 

I'd like to take a second to give major props to Jameson, who has been awesome and a huge help while Aberdeen and I have been struggling. He's always been an amazing husband and father, but I've been especially thankful for him the past few weeks. So thankful.

Praying for better news for our bird at the next appointment and a little peace for all of us. 


  1. What a joyful ending pic! She really does seem perkier in photos; almost like we can see the diff! So sad for your heart...but LOVE your mommy instincts. I also know where your truest Hope lies.

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