Thursday, January 12, 2017

It's Time I Write Again

As life has gotten to be more "normal" for lack of a better term, I have gotten way too busy to keep my blogging up. Truth be told, I have put myself last for a very long time and 2017 is my year to change all of that. As most of you know, writing helps me get through these crazy times that Dude and I live and it's nice to have a place for everyone to go to keep up on his journey. So let's recap the last however long!!!

Last year was a hard one on us. Dominic became extremely sick and there was thoughts that this might be the end. His protein levels dropped to a dangerous level and he wasn't getting better. He had infusions of pure protein (IVIG) but despite everything, he was still swelling up faster than we could deplete... I was scared. I have never been as scared as I was last year. There were so many questions and zero answers. We were finally diagnosed with Protein Losing Enteropathy... or PLE. For the first time EVER I googled what in the heck that was.... take it from me... don't do it. PLE is manageable for most otherwise healthy individuals... but kids with congenital heart defects, its not a good outcome. We lived in this circle of get sick, get swollen, spend time in the hospital, get infusions, come home and do it all over again. Because of this new diagnosis, our amazing cardiologist had to pass us to another doctor. One who had more time for us... one who was just a pediatric cardiologist. For those of you who don't know me well, change and me have a love hate relationship. If I chose the change, bring it on! But, please don't you dare spring change on me! Anyway, new diagnosis, new doctor... Luckily this doc did her residency at Doernbecher WHILE Dude was in the hospital recovering from his last heart surgery. She knew him. She worked on his case, and she was working under our beloved Dr. Armsby. *Sigh of relief... a little*

Okay, so new doc, new diagnosis... and new news. Because we seemed to be losing this battle slowly but surly to PLE, Dr. Carlson (new cardiologist) thought it might be good for us to start looking into our next step. Transplant.

Holy scary word!! My suspicions were right! We weren't going to make it through this! But, lets fast forward... We had a consultation at Stanford, they could have told us that we weren't a good candidate, but we are! Whew! Not in the clear but at least we have options right?! Now our life consists of bimonthly appointments to Stanford and bimonthly appointments to Eugene to see Dr. Carlson. Because of this HUGE change in our life, and my continued effort to keep Dude as healthy as possible, I took him out of school and decided to homeschool. Sure, that's a lot on my plate but what's more important than keeping my child as safe as I possibly can? Nothing in my opinion. I'm sure all you mamas out there would agree with me.

Now here we are!! We have been on the transplant list for a year, and traveled to Stanford about 6 times and Eugene as well. Dominic continues to get healthier and healthier. It seems (knock on wood) that his PLE is in remission!! He has been healthy and his protein levels in his blood are extremely... wait for it... NORMAL! Not normal for him... straight up normal!! So guess what we did? WE WENT BACK TO SCHOOL!!

Now you're all caught up! I want to write all about school next time! There's just too much to put into a single blog post! Thank you all for taking time to read about our life! I can't tell you how much it means to Dude and I to have your love, thoughts and prayers in our corner. No matter what punches life keeps throwing at us, we know we have backup and we know that we are going to be okay. Thank you again from the bottom of our hearts. We love you!