Ethan’s Journey

I woke up today. I woke up early on my “day off” which I say in jest. I laid in bed, under caffeinated. It was still dark but I stared at the ceiling fan going around and around and around. My mind was blank yet full. What the hell is that noise? I wondered. A continuous series of three beeps, then a pause, then three beeps. It was faint to the point I even questioned if I was actually hearing it or not. I cleared my mind with a phone game. I like to play games on my phone because I have to use all my brain power to focus and I can’t think of anything else. Some people do heroine, I play games on my phone and drink coffee. We all have addictions. The noise I later discovered, was Ethan’s dialysis machine and had been doing this series of beeps all night long. Ethan slept through it. Wow! Paul woke up and asked me what I was doing today. With a heavy sigh, I told him. I was overwhelmed and listed off a list that wouldn’t stop. I had verbal diarrhea all over Paul. It was practically drip

Warning: my mind is running amok. I am a little cranky. Probably not a great combination. I always here the phrase “it takes a village to raise a child.” I think the saying should be changed to “it takes a village to get your kid’s parents through a heart transplant and the aftermath”. Applying for SSI, applying for Medicare (or at least trying), applying for Medicaid (or at least trying) just to help your child financially get through this disaster….it’s not for sissies. I am giving my patience a workout. Calling the collection agency we have been sent to inappropriately because insurance says the hospital screwed up the billing and coding, while the hospital is saying the insurance isn’t going to cover this and that….the collections agency not listening and repeatedly asking if I want to pay by credit card or check, on a balance I am pretty certain is inaccurate. All while trying to pull off a full time job while doing dialysis four times a week. Ugh!  Did I mention Ethan has applied

Today I had one of those days that moms have now and again wishing I had more time with the kids. I feel exhausted all the time and when I get home, even though they have helped around the house, there is always more to do. I know I am not the only one that feels this way. This week is busy for us. We have several appointments. Tomorrow is neurology. It should be an interesting appointment because we have noticed over the past several months that Ethan does these odd, rhythmic patterns with his right leg. His stroke was on the right side, so it shouldn’t be from that theoretically. Then there are three appointments on Wednesday plus many errands, another appointment Thursday….then we will have a break. Phew! Ethan is still in awe of what he has been through. He openly chats with people about it. I think it helps him work through it. He asks a lot of questions and wants to make more videos. Anemia is kicking his butt a little bit. He gets tired easily. Today he was napping while I came

Today was one thing after another. Not a hard day but a busy day. No time to rest. It didn’t help that I somehow missed making another batch of dialysate. Oops. Had to haul five, 5 liter bags upstairs and start over because of the mistake. Not a big deal but time consuming. I would like to say live and learn, but it seems the learning part I am a bit slow on the uptake. Ethan was tired today. He took a brief nap this afternoon and went to bed early. All of his fun last night was catching up to him. We got to meet Ethan’s Make a Wish grantee today face time face which was a first. Covid has slowed the Make a Wish process way down. It was really nice to have a personal visit. My leg has healed really well. It doesn’t hurt anymore and is not swollen. Woo hoo!

Hot! It was really hot today. Today was a fun day. Ethan had organized a car meet at our house. We had an influx of people come and go. Ethan was thrilled. My brother and his wife visited and it was nice to see them. Today felt like a sliver of normal. No dialysis. Being able to relax for a moment. Visiting with friends and family. For a moment, we forgot all about the medical crap and Ethan was able to be a normal 18 year old. It was a gift for the entire family. We all had fun watching people peel out of the driveway. We had one car do a massively impressive burnout in the driveway leaving bragworthy skid marks down our driveway. We all loved it. This afternoon and evening were my bright spot.

 When did life get so tiring? I feel tired. Today we did dialysis mid afternoon. During dialysis I tried, once again, to call Medicare. Then they rendered me to Medicaid. Called Medicaid because Medicare won’t help.  I can’t apply Ethan for Medicaid because he needs to be on SSDI which he doesn’t qualify for. So now what? I was referred to NY State of Health Commerce and They set me up with an account (that I didn’t need) online but when I asked after 45 minutes of how this would get me closer to figuring Ethan’s dilemma out, He told me he wasn’t licensed in helping with Medicaid or Medicare therefore he could not advise me on what to do. Thanks Pal.  I consider myself to have average intelligence and am frustrated at this entire process. So in total I was on the phone almost 2 hours and have nothing to show for it except deeper WTF creases in my forehead. I am now going to engage my social worker and see if any progress can be made. Ethan cleaned the engine of his car today. Great for

I got a phone call today at lunch from the endocrinologist from NYC. Ethan had some follow up tests last week to make sure the tumor on his pituitary gland isn’t misbehaving.  In fact, the tumor has settled down and many of the values that were elevated in the past are now approaching or are in the normal range. Most of these tumors are benign but can cause issues with vision impairment, headaches, loss of pituitary function or excessive hormone production that has its list of a bazillion (yeah….that’s a real number) medical issues. This tumor caused Ethan’s hormones to be all out of whack (I am certain that is a medical term) earlier in the year. This is when he was diagnosed with hypothyroidism and has been on a supplement since. This was great news! I am so glad the levels are settling out. Sometimes when someone experiences such a significant critical illness these types of things happen. Ethan is perfectly imperfect. He’s Fl-awesome. Dialysis went well tonight. We started up the i