11/12

There has got to be some saying about frustration and how it leads to bigger and better things. I am so frustrated and angry. I really shouldn’t be, but I feel it all the way in my bone marrow.

I called the Medicaid office to select a health care provider. This has to be done by the 14 th.  I tried to do it online but when I get to the final step, it won’t accept the choice and it gives me a number to call. So I called. After several minutes on hold I spoke to a live person. I did a small spirit fingers gesture in excitement to be able to cross it off my list only to be denied. The lady told me that they were experiencing a high call volume and someone would call me back. Ugh! If I am busy and I miss the call I have to wait hours for them to slow down to call me back?  What kind of stupid cycle is that?

I also tried to get a Medicaid travel application. You are supposed to get one for when you travel. Within the 19 pages of rules and regulations there is no reference to a link to the form you need, or really a direct phone line or web address to lead you to the information you need. When I tried googling different variations for Medicaid Travel forms, it kept leading me back to the unhelpful 19 page document.

I went to start Ethan on dialysis. The machine was giving me issues right off the bat. After several attempts to troubleshoot as well as starting over from scratch, I ended up calling the help line. The start up process was almost an hour and a half instead of 25 minutes.

Dialysis was spent sending forms to be filled out by medical professionals, for Ethan’s college. Also, forms for the kidney foundation as well as emails to my transplant coordinator. I also spoke with Ethan’s nephrologist regarding Mondays appointment.

I have some great friends in my life. My BFF, Sarah came over and helped me clean the house while Ethan was having dialysis. We went to lunch together and ran some errands and had some candy.

Shout out to my very brave friend that had surgery today. “Heather! Hi Heather!”.

Ethan opened up a little to Paul and I about some of the frustration he has moving toward our surgery date. Ethan is still in the grieving process about what happened with his heart transplant. He is angry he has had to endure so much trauma. He is angry I pushed him towards college. I am hoping he will see the greater good when their is less tension and stress surrounding these next few weeks. He doesn’t let on all the time, but he is still convinced he is not going to make it through surgery OR he is going to have the same traumatic events as last year.

Ethan is frustrated because he used to do things with his friends every weekend. Now his friends are working and doing college. Change is never easy, but a great group of guys I know like to say “change is to survive”. This is one of those times those words offer valuable comfort.

As we weather this storm, we don’t always know the right things to say, but we love him and are here for him. That is what matters most.