Ethan’s Journey

 My stress level went from threat level midnight (very bad) to baseline. I am not sure there is much difference but it feels better. I was able to make contact with the Medicaid office. I spoke to this wonderful woman that listened patiently regarding Ethan’s medical issues and directed me on what options were available. We are going to go through a renewal process and get him back into Medicaid. I verified it is retroactive and we can purchase his medications, and get refunded once the application is renewed.  Apparently we were sent a renewal form (lost in the mail). I did not see it and figure it is lost in the mail somewhere. I feel so much better. Then the calls started coming in. Our gal at the heart failure center had our back. One lady made a call to the pharmacy to get things situated for Ethan’s medications.  Another lady called me and said that the renewal form the First Lady told me about would delay Ethan’s care by weeks.  Lady number 2 did it with me on...

 Sarah gifted me a fabulous coat for Jiminy. When he puts it on he becomes a PIMP/Drug dealer. He becomes a misfit of society. We were laughing as we talked for him different things maybe a pimp or drug dealer would say…but in a tiny little Jiminy voice. I needed a laugh today because I received a letter yesterday saying that Ethan’s Medicaid has been discontinued. Of course the social services office is only open 9 am -2 pm. Those are better than bankers hours. To be fair, I am sure they work longer hours but they turn off the phones to do so.  I had to scramble to rearrange some of my calls today to allot for the holding I anticipated doing. I didn’t have the heart to tell Ethan about the letter yesterday on his birthday. Of course, his coverage ended 1/31/26 and he just had an echo and annual cardiac appointment. We have to get it situated quickly so that he can not have a lapse in his medications.  The pharmacy said we can pay out of pocket, but we are not independent...

 Happy Birthday Ethan! This morning I set my alarm for 5 am so that I could wake up and make cinnamon rolls for Ethan for breakfast. My alarm went off. I was dreaming and totally heard it but incorporated it into my dream. Paul had to wake me up to shut it off. I usually don’t sleep that hard. I made the cinnamon rolls and put a dollop of frosting on them. I served them to Ethan and teased him that I made him “boobs” for breakfast. Ethan is so modest, that he does not find my humor that funny. He is far more mature than I am. He is a tough audience to make laugh. Occasionally I pull it off and it is a sweet reward! Ethan made a passing comment. “Remember last year at this time we sat in urgent care all night”. He said. Last year we did in fact sit at urgent care for about 4 hours. Ethan had a nasty pneumonia and needed x-rays and a couple antibiotics as well as a steroid.  “Yay! No Urgent Care on your Birthday….1 year in a row.” We both laughed. It gets so ridiculous that all ...

 Ethan and I went to the cardiology office. He went in to have his echo done and I waited in the waiting room. I chose a chair off to the side away from everyone. Apparently I had an invisible sign above my head that said “Please sit as close to me as possible”. All the chairs within a few minutes were full around me.  I was planning my exit to the other, vacant side of the room. The guy next to me coughed and then told his wife his stomach hurt. He then started burping. His wife was sniffling like she had to blow her nose. It was like nails on a chalkboard. I never used to be like this pre transplant. I gathered up my things and as non-rudely as I could to get the hell out of the germ cloud that had been brought my way. I can’t have Ethan breathing that sick and burpy air. Ethan came out and shared that they gave him image enhancer for his echo. It is a solution that causes micro bubbles and allows them to see his heart a little clearer.as they gave him the solution, a collec...

 I was giggling about a text message Ethan sent me today. I shared it with a few friends that I knew would find it funny too. He had me cracking up like a 7 th grade boy. Today was a smooth Monday. I ran some errands after work. I made sure to gas up my car since it was so warm out. Tomorrow I will drive across town for Ethan’s appointment so I needed to add some fuel. I did my exercising tonight even though Avery and I weren’t on a call. I texted her what I did and she will do the same when she gets around to it. I decided to go to bed early again. I had a head ache and just wanted to be in the dark.  Sleeping makes me happy so I don’t mind.

 Well today was leaving day. Because I. We did have fun. Paul and I were chatting about how different each of our friends are but how we have come to accept and celebrate one another. We appreciate they have done this with us as well. Especially when I bring the nervous dog that growls. On our drive home we saw a bald eagle on the side of the road. It started to fly away as we approached. It was ginormous and such a cool thing to see. We got home and found a woman in our driveway with part of her car off the driveway. Ethan was helping her try and shovel out her car. Paul had a few choice words to say before he got out of the car to go help her. Ethan and Paul proceeded to help this woman, who was dropping off a package FOR US, (doing her job) and gets stuck because our driveway isn’t as plowed as it should be. They were able to secure her car and get her out of the driveway. One of our neighbors even brought down his tractor because he saw what was going on. Yay for neighbors! Eth...