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. 

Monday, August 15, 2016


This past Wednesday, we celebrated Aberdeen's second birthday!!! At only three weeks post-op, we spent a quiet day at home summed up with cake, presents, and a visit from Auntie Jubie. I've had some trouble composing this post, as I can't quite formulate the thoughts and emotions I've had in relation to this day into coherent sentences, but suffice it to say, I'm extraordinarily proud of our little bird. I'm so incredibly thankful for these past two years and all of the smiles, laughs, tears, and triumphs we almost never had. This girl absolutely illuminates our lives, and while keeping us on our toes, has made us feel more blessed than we could have ever imagined. She is a true delight, and I am so thankful for every single day with her. Even the tantrumy days. Even the hospital days. Every. Single. Day. 

Thursday, August 4, 2016


We arrived home late last night, a mere two weeks after Aberdeen's open heart surgery!!!

Abby's post-op appointment went great! Her echo last week showed that, even awake and not super happy, her gradient is still less than 15. While this technically means that she still has obstructive hypertrophic cardiomyopathy, her heart is in a much more manageable place for now. Yay! Her X-rays have looked great, she isn't sweating or puking anymore, and we're hoping that this myectomy will buy us at least a few years before we have to talk about surgical intervention again. 

Abby was SO excited when we got home. She was squealing and laughing playing with all of her toys and rolling around on the floor again. She was decidedly less happy about having to go to bed and had kind of a rough night overall, but hopefully now that we're home, her temperament will start to even back out again - holy tantrums, batman. 

She is on sternal precautions for the next month, meaning we can't pick her up under her arms, pull on her arms, or allow her to put much weight on her arms or chest. This is a little tricky now that she's bigger and not yet walking, but we're managing. We also have to keep her away from busy places until she's off of sternal precautions, as we still need her to not get sick. So we'll be having low-key birthday celebrations at home this year, but we're seriously thrilled that we will actually be at home and not in the hospital as we expected! Woo hoo! I can't believe Aberdeen is turning two next week!!!