Frazier's Full House Farm and the Adventure of Addy's Heart: Results of our big day of testing!

We arrived home about an hour ago and Addy is almost back to herself. She did great through the procedures and is now appropriately crabby from anesthesia and overstimulation. The medical team was on their A-game today and everyone was great! I like to think that every patient receives such great care and has such great attention paid to any detail, but whether that is true or it is because they all know Heath and I- I'm glad they do! She is a little hoarse from the bronchoscopy but they have given her some steroids to help with the swelling of her airway. The good news we received today is that the pulmonologist said Addy's lungs look GREAT! This is a big relief, this means he saw no hypoplasia or compression of the lungs, and no signs of institial lung disease apart from expected chronic changes because of her cardiac disease! They did see a LOT of edema and redness in her airway, some subglottic swelling, and adenoids that were nearly occluding her nasal airways. We have an impedence probe on Monday to decide if reflux is one of the perpetrators in these problems, although I am not convinced that it is. We are also starting Flonase to try to shrink her adenoids and reduce some nasopharynx swelling. The thinking is that her adenoids/allergy problems are causing more mouth breathing and decreased airway clearance --> hence hyperventilation --> leading to air trapping/hyperinflation of her lungs and desaturations. We are THRILLED that her lungs look great as we feel that her airway issues are very manageable and less likely to cause major complications at the time of her Fontan. While we were there today, her cardiologist decided to go ahead and sneak in an appointment for an update as well. She is overall thrilled from a cardiac standpoint of how Addy is doing. They did a cardiac reconstruction using the contrasted CT today to take a look at her heart, but unfortunately they weren't done with the reconstruction yet. We hope to have those results by Wednesday but we are not expecting any surprises. Dr Kavanaugh has put in the request to schedule her final surgery, and we are expecting it to be the first or second week of September. We are trying to work around several things such as Heath graduating with his Pediatric NP degree and taking boards in August, and me (hopefully) starting the program in August. She was 22.6 pounds today, although she feels much heavier when we are carrying her around! Hopefully next week will provide a new set of information as we work to slowly piece together the mystery of Addy's breathing difficulty. She wouldn't be mine and Heath's child if she did everything as expected, but that is what makes her so special! It doesn't seem like it has been so long that we should be discussing when her final surgery will be! She is growing up so fast and is rapidly becoming a little girl instead of a baby! We were so proud of how well she did today, she didn't cry or freak out one time while people were doing the necessary things such as blood pressures, EKGs, and assessments! Here are a few pictures of the last day or so. I will try to update as we find out more information. We would like to thank everyone for the prayers and support!

The night before any procedure or surgery, I always feel the need to take a few new pictures of Addy girl. I guess it's because you really never know what tomorrow will bring and I want to remember every day I can along the way. Here she is playing in the "baff", which is a favorite activity of hers!

Ha-Ha-Ha, this is great fun!

"Where's Addy?! I can't see you!" She loves to play peek-a-boo!

On the way to the hospital this morning she was subdued, she takes after her mommy and is not a fan of being woken up at 5 am! I did manage however to get one of those beautiful smiles out of her though! Of course she has her special blanket and "Bearie Manilow" for the day, our essentials for any hospital visit!

Love that smile!

As a reward, Daddy had to make a trip to the hospital gift shop for a surprise! Here she is playing with her new Elmo and Grover puppets and her cow! Every time she goes into the hospital we get her a stuffed animal for being such a brave warrior. I think by the time she is 5 we will have every animal on the planet but she is worth it! She is so brave and special, we would buy her the world if we could for what she goes through!