Saturday, May 24, 2014

Fontanniversary & a heart re-check

waiting after her echo to see Dr. C

Today marks 3 years since this girlie's had heart surgery. We call this her "Fontanniversary" and try to recognize it in some way as it's a special day. May 24, 2011 was the day she completed the three-staged surgical repair on her heart, having her third open-heart surgery called the Fontan. Tonight we'll celebrate with chocolate cupcakes and her choice of movie, which I've been informed is "Beauty and the Beast" (the boys will be so thrilled!) 

In fitting fashion, we made a trip over to Seattle yesterday for a quick heart "re-check"...over the past couple weeks she's been extra tired, her sats have fluctuated between the upper 70's-mid 80's and we've noticed more blueness than we have in a long time. I'm glad she and I made the trip over. After an echo, Dr. C commented that she's developed more collateral vessels and when they can be seen on echo, they're usually quite significant (or we just got lucky) but they're also tricky to figure out where they're robbing blood flow from/or dumping it in. She's struggled with growing collateral's in the past, the question remains do we do something about them as he believes they'll just continue to grow. Some kids just grow them, Maddie is one of those kids. Her sats were 87-89% in his office, which is great & within her norm, so as of now, he'd like to wait. If she begins to trend down and stay down with her O2 saturation's, then she'll have to have it addressed in the cath lab and hopefully they'll plug her fenestration while in there. She still has some mixing of unoxygenated/oxygenated blood which causes her sats to be lower than if she didn't have a hole in her Fontan conduit. The best part of the day yesterday was just spending time one-on-one time with my girl-chatting during the drive, shopping at the outlets in North Bend, and having a nice lunch at one of our favorite places.

Subbing in Maddie's Kindergarten Class!

Little did I know that this girl would teach me so much...Having a child with a life-threatening condition has changed, stretched and strengthened me. It hasn't happened over night, accepting the unknowns of Maddie's future is difficult, but it has thankfully brought me closer to God than anything else I've experienced. I'm incredibly, eternally grateful. 

Happy Fontanniversary Maddie, you continue to amaze me each and every day! I love you so much!