Tuesday, September 2, 2014

Were Home!!!


Leaving Children's
Such a good feeling to be heading home.
This is when she started to realize we were leaving.
Bye, Bye!
She was pretty excited.  She smiled pretty much the whole way home.
Heading home after our Warfrin check today.
Can't wait to be home again!!!
Wow! 12 Days for major open heart surgery and home!!! Raygen was amazing. To sit here at home with both my girls is such a wonderful feeling. I haven't felt this good in a long time. It is so strange to me not to have the Fontan lurking over our heads anymore. The dreaded "maybe this summer" is no more. The next steps for Raygen are unknown. The options after the 3 stage surgeries is transplant so we pray that her half a heart will last our girl a very long time. I hear stories of HLHS kids who are playing every sport they wish, having children, sky diving, so Raygen's future is what God wishes it to be. For right now we are extremely blessed and know there are no words that could fully describe how lucky we feel today and everyday that we have with Raygen. I wish I could personally hug each and everyone one of you that prayed for Raygen and that send us well wishes and encouraging messages. They truly got us through the hardest days.
Since the Fontan Raygen has a few more medications that she will need to take for a while and then slowly weaned off of them. Mostly diuretics since the Fontan causes a lot of draining in the chest they like to keep the kids dry. She is also on the blood thinner Warfrin, which is very scary for us. It will be a lot of finger pokes and testing to keep her in the "safe" level. We have to keep a close on eye on her if she falls or has any strange bruises that continue to get bigger in time because Raygen is high risk for bleeding while on Warfrin especially if her levels are to high. She is still on a no fat diet for a few weeks so we are keeping a close eye on her weight and while being on the Warfrin that also limits the amounts of certain vegetables she can have. Raygen also has a huge sore on her back from her tape being removed from her chest tube so we are watching that. Hopefully Friday when we have a follow up with Dr Park Raygen can have some stitches removed and of course she will have another finger poke to check her Warfrin level. She likes to keep us busy 
Now for Raygen: We will have to work with her to start walking again. We would really love for this girl to learn and enjoy eating by mouth. She will also be evaluated by Children's to see if they consider her autistic.
Raygen is truly a blessing from God. She has taught us so much about life, God, and ourselves that without her we would have never discovered on our own. It is humbly to watch my daughter that has been through hell and back bring me her bubbles to blow for her. She has no idea how amazing she truly is, but I am never going to let her go a day without reminding her.
My prayers go out tonight to those families who left Children's without their child and to all the families who are just starting this journey. Just keep having HOPE that's all I can say.
xoxo
E