1/10/2022

So we are down to the final countdown to go home with stupid covid trying to grasp at us with it’s dirty claws. Threatening to lengthen our stay here. Every ache, sneeze and tickle in the throat causes panic for not only myself, but for Ethan, Paul and Avery too. Normally, we wouldn’t care so much if we got covid because we are healthy. But throw immunosuppression into the mix and it is a wild card.

We don’t know what would happen if Ethan got covid. Hopefully now that he has antibodies, he could at least stay out of the hospital.  Maybe? The hospital would be a disaster. If we are in Rochester, he likely would not be able to have me stay with him. 

Right now we are scared of everyone. Paul and Avery are doing their very best to stay away from people, stay masked and wash their hands. It is easier for Ethan and I. We just stay put in the apartment.

Avery is daily thrown to the wolves. She is walking the halls of her high school with covid dancing around her and taunting her, grabbing her friends and classmates by the dozen. Again, not a big deal if a healthy person gets it. But it’s the fear of the unknown if Ethan gets it.

I have seen a lot of people on social media state that they will absolutely not wear a mask in public. Sometimes it is for medical reasons. I get that. It is hard for Ethan to breath wearing them with his increase lung pressures and asthma. 

To each their own. But sometimes wearing a mask isn’t just about protecting yourself, it is about protecting the people that are getting chemo, or have debilitating diseases that make their already hard life, harder with complications of even a cold. I will not apologize for wanting to protect our fellow community members. I choose to diligently wear mine to keep my family and everyone safer (from me at least, who knows what I have). At least I can feel like I am helping. After all, every medically frail person has people that love them too.

I know I have a skewed view on this because it is so critical for Ethan to be safe. It is not up to society to change because he is medically fragile. I am also very pro-choice. Everyone has the choice to do as they please. I may not agree with it, but that’s ok because others may not agree with my point of view. We can agree to disagree. I will not question your choice, and you don’t question mine.

I am so sick of the fear. We have come this far. I am so sick of covid and can’t wait for it to be gone. I also can’t wait until Ethan’s immune system  gains a little strength so he can at least have a little more protection against common viruses.

This morning we went for lab work and an appointment. Everyone at the hospital is so nice. Ethan took his medicine and I had to give him his stupid injection on the underside of his arm. The painful one that he hates. 

We got a call and found out his procedure tomorrow is at noon. They want him to fast 12 hours before. They don’t know what it is like to have a hangry Diiulio. It will be torture for us both. Ethan was pissed. He assumed it would be first thing in the morning. He is worried because he will have to fast again tomorrow night for his heart biopsy. He is trying to gain weight. Luckily he is up to 126 pounds.

I called the pharmacy to refill a few of his medications and ask where 2 of the medications we were supposed to receive last week were. Apparently they were already delivered, however, we didn’t actually get them.

There must not be a protocol for this situation as the man at the pharmacy repeated over and over again that they were already delivered. He had a tracking number. 

I repeated that we do not have the medications in our possession in a few different and simple ways that I could possibly make him understand. He didn’t understand. I verified the address. So I asked, “should I have my doctor send the script over again? What do I do in this situation?” He was very angry and said they would resend the medications to us even though “you already have them.”

Now if I am going to steal medications or try to rip off the insurance company, it is not going to be over an injectable anticoagulant and some lidocaine cream. Where could I sell those? Anyone want any blood thinners? $20 per injection.

We got a call later in the day with results and the phlebotomist goofed the orders up. We had to go back to the hospital and get ANOTHER blood draw. 3 pokes today. He feels like he is being tortured. They needed the last test though to make sure he was clotting well enough for “surgery”.

Luckily the last blood draw yielded good results and Ethan’s Coumadin level is low enough that it is safe for him to have his stent out. Winning!

My bright side today is that Ethan and I shared many laughs watching tv. Just good deep belly laughs. He has some good one liners.