Ethan’s Journey

I got the call today that Ethan was switched from the Essentials plan to straighten county Medicaid. This will be so helpful for him. He may need to be re-evaluated again but right now we can pick up his medications. I have 3 refills waiting for Ethan to pick up. It is also nice to have an awesome pharmacy. Our pharmacy is so kind to us. They have everything ready and are always available for suggestions. We feel like they care. If they don’t care, they do a super job of hiding it! As far as how much of a pain this Medicaid situation has been, I have learned a lot of useful information I can share with others. I am thankful for that. I had a long and busy day. Friends kept me entertained though with funny texts. I got a play by play of jury duty and I felt like I was right there. I could almost smell the one guys bad leftovers heating up in the microwave. People are unbelievable. I worked a little late to squeeze in one last phone call. I am hoping my efforts pair this person with thei...

 Paul and I had our morning coffee together. I totally enjoy annoying him. “Paul, what do you think Lo Mein noodles are made out of?” I was asking because I didn’t know and wondered if it would be an egg and flour base like pasta.  “It’s made of Lo Mein.” He said. “Thanks. Thanks for that useless I formation.” I said.  Just another Sunday conversation. He laughed at me response. He annoys me as much as I annoy him and I mostly enjoy it. By the way, Lo Mein just means noodles mixed together, it is not the ingredients of the noodles Paul! Our conversation naturally led into what we were doing today. “I am going to get groceries and stop at the liquor store and get TWO boxes of wine so we don’t run into an emergent situation like last night where you have to drink bottled wine.” Paul was forced to drink wine out of a bottle last night and commented that he thought bottled wine is stronger than boxed wine.  “It was not an emergency.” He said. That was his today argument....

 I worked with my old friends today. We had fun. It was nice catching up. One lady and I have a special relationship where we shoot each other the bird as much as possible. It is done in a fun way. I look forward to it as does she. I got to look at, touch, help lots of pets today and I enjoyed that. There was a Chihuahua I got to work with. My favorite! I did regret saying yes to this when I was walking to my car this morning. Brrrrr! The regret was brief and passed. I took a quick nap with Jiminy when I got home. I think it was from all that people-ing that I did.  Off to donate blood, and then Ethan decided he wanted Chinese food take out for his birthday dinner. It is very salty so he rarely eats it.  He LOVES the cheese wontons. He got his meal and he ate it happily. I order the Kung Pao chicken. I like it for the spice. It was a tad bit spicier than usual and it made my nose run. I mentioned multiple times it was spicey. I even had to blow my nose a few times. Paul w...

 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...