The Next Step

 So after calming down from my explosive anger the other day, I want to thank everyone that has reached out.  We so much appreciate it.  It does help more than you know. This whole process is not for the mentally weak.  This is our story of our journey and our ups and downs.  Tuesday was definitely a crap day. Please keep in  mind that I am juggling this with two jobs, a weird school year for the kids, and may have an outburst here and there.  This is my way to vent so bear with me. It helps me sort out my thoughts.

I have made an appointment with Ethan's cardiologist in Rochester for next week.  Ethan's cardiologist said he is going to run an EKG and echo to see where things stand.  This guy is fantastic and I can't say enough good things about him.  We have been texting through "My Chart" daily regarding little bumps in the road Ethan is having. We monitor his weight and heart rate as well as give updated daily issues. Ethan hasn't been feeling well.  He is fatigued, not eating well, not sleeping well but managing to juggle school and his new internship.  Many times in the evenings his stomach is bloated and he feels like he can't eat because he is still battling the sores in his mouth.  He has been having low grade fevers off an on that wipe him out. Hopefully we can get him started on a medical treatment plan that gives him some relief.

Ethan felt well enough yesterday to have some friends over to ride 4 wheelers and go karts.  His friends stayed for a campfire and chatted the evening away.  This is encouraging because he has had some evenings when he has laid on the couch exhausted.  He did start feeling like crap.  His friends were great and just played games and chatted all afternoon.  We had a campfire with all the kids.  Ethan plunked into a chair (maybe drifting in and out of sleep...He says he wasn't sleeping) and hang out with his friends and some music. I think this was well needed for him.  He was able to disengage and be a kid for a day.

Ethan is having some anxiety about his appointment.  I can't imagine why?????  He is worried that they are going to tell him terrible news.  I understand where  he is coming from.  These appointments always cause me anxiety as well for the same reason.  Ethan and I make a good team going to the doctor together.  He often gets cranky towards the end and hates when I ask questions.  The problem is, I ask a lot of questions.  I have learned to bring a snack for him to subdue the hangry.

I have been in contact with the doctor and nurse assigned to Ethan in NYC.  I have also spoken to a number of other people to help put things in place to try this little process again.  The bright side is that everyone seems to be rooting for Ethan (except the insurance, but we are hoping to jump that hurdle soon).  Thank you all again for keeping us in your thoughts.