An introduction

I guess I should start by saying why we are putting this blog together. I imagine it is like most people who start a blog. We wanted a way to be able to speak about our life, most particularly in regards to our sick child, without blocking up social networks like Facebook.

Nathan, our second son born on May 31, 2013, was born with Ebstein's Anomaly. Here is a basic picture of it https://umm.edu/~/media/ADAM/Images/en/22703.ashx. Since birth, he has been in and out of the hospital. Currently, he is almost 9 months old and has had 4 open heart surgeries (OHS) and 3 cardiac catheter procedures. He has been in the hospital for over 90 days total. He continues to fight for his life. We aren't starting this blog to get a huge following; we don't expect anyone to even care. However, we need somewhere that will allow us to vent about the bad times and cheer on the good days.

Right now, I'm sitting in a hotel in Rochester, MN outside the Mayo Clinic. My son is in there after his third and fourth OHS. It is cold and negative something degrees outside. The snow lines everything out doors. I should mention, we are from Arizona. Where it is sunny and warm and snow is just a strange figment of some crazed person's imagination. We hate it here, but are here to give our son a fighting chance at some semblance of a normal life. He is in the hospital on a machine that is supporting his breathing, a ventilator. He is on so many sedation medications that it would put an adult in a coma for the rest of their lives; this may be a slight exaggeration. He isn't tolerating getting fed through a tube that is sitting in his stomach. He hadn't pooed in ten days, but finally did and, lets just say, it wasn't pretty. So, I guess that leads us into our first blog, which is a boring start but a start nonetheless...

We had a boring and frustrating day. They're "diuresing" Nathan, which means they're making him pee. Everything is tough right now. He is on a pacemaker that is helping his heart to beat at the right rhythm. However, this also encourages his heart to be lazy. Thus, his heart doesn't want to do any work. When they turned off the pacer, his heart essentially gave up and his blood pressure bottomed out. Meanwhile, they keep turning up the medications that put him to sleep. Making it even harder for his heart to do what it needs to. In addition, they aren't turning down his breathing machine settings, which, again, makes him not want to work. I tried to talk to the doctor about all of this, and he blew me off. I had to step away from the hospital today. I felt like if I stayed there, I would go off on someone. Grrr!

In addition, our two Ebstein's family friends got to leave today. Looks like it is just us now. I'm thrilled they got to leave and sad that we have to stay. Tomorrow is a new day, right? Keep up the faith, right? So easy to say, and such a struggle to accept.