Where to begin? The last couple weeks have crazy busy hectic to say the least!!! First we got married! We're all Ringenbach's!❤️❤️❤️ Seth and I got away for a whole week thanks to my mom Di! She was amazing and kept them while we vacationed! A much needed vacation. No sooner did we return and just like that we're back to reality ! Brody had a busy week... Two cardiology visits, one ambulance ride.. Two Emergency rooms all in a few days. Brody is ok... Just being Brody I guess?? His little body has been through so much... He takes so many medications and still he's happy!
Basically Brody is being diagnosed with something called PLE, protein loosing enteropathy. It's complicated, 5% of Fontan patients get PLE... 5%... That's our boy! So where do we go from here? There's one specialist for PLE in the whole country. Dr. Jack Rychick and guess where he is? Yup! Philadelphia, CHOP is always the answer. Brody has such a team working on him. Stanford, Phoenix and CHOP are all in collaboration to make sure we're doing everything we can to maximize Brody's health.
I have been trying everything in my power to help our boy! When you have PLE you loose to much protein... Protein is what keeps your fluids inside your vascular system. When you don't have enough protein fluid leaks out of your vascular system into tissue causing swelling.
You also loose valuable nutrition your body needs to survive. I think I may have spent a fortune these last weeks buying protein powders, vitamins and minerals to try and replace what he's loosing. Only problem is Brody is so picky. He won't drink any of the 11 powders I bought... I mix it, freeze it, shake it, pretend it's ice cream, sneak just a tiny bit into his milk... NOTHING. Brody proceeds to tell me this milk is yucky get me fresh milk. I follow him around trying to get him to eat all day! We even eat in the bath tub and in bed!
Deep breaths, one day at a time. We have started new medications and the medications seem to be helping. We will draw blood again next week in hopes that his albumin ( protein) is higher. If it's not we will be heading to CHOP for another heart Cath to possibly open his fenestration ( tingly hole that releases pressure) in his heart. Sometimes doing this helps with PLE, takes some of the pressure off, in return takes some pressure off of his liver which is the producer of lymphatics. Confusing I know... Basically you have a vascular system ( blood) and a lymphatic system ( lymphs) both completely seperate. Brody's lymphatic system has been damaged multiple times because of all his surgeries. You have millions of lymphs all over you body, you can imagine opening his chest 4 times, 12 caths to his heart... Central lines, art lines... Damaged his lymphatic system. So this is what we're dealing with. More meds
PLE is associated with such a higher mortality rate than what we were already dealing with. Pray for guidance for his team, he really has people all over the country working on him. In the meantime I spend my days on the phone, conference calling back and forth, trying to feed Brody, stuff meds down him and of course don't forget about Charli! She's a full time job to! She's a full time dancer which keeps me busy on top of already being busy! I love them... They make me happy
God is good everyday! Everyone has their own battles... This is our story. Spend your days happy! Tell your people you love them! I tell my babies every day I love you so much! Brody always hugs me and says I love you so much mama... All that matters! Kiss the ones you love❤️❤️❤️
