6/29/21

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 and been accepted into the MCC automotive program? So there is a whole bunch of stuff to do for that and I have no idea what I am doing, but still trying to get it done. I am not doing a great job at it. I am Gumby being pulled in a million directions.

We have 6 appointments this week to top it off? I am starting to become a little bitter. Maybe it is the extremely steamy temperatures that have us sweating just by walking near a window. 

Thankfully I have run into more ground angels that are trying to help me which is exactly what I need. Family and friends…..thank goodness for them!  I am thankful to have people driving the kids around when I can’t. I am thankful there are people reaching out with ways they can help. I don’t even know what I need help with most of the time. I am just trying to get through the day. Survival mode. If I have had a shower and coffee I have succeeded.

Some days Paul and I communicate briefly by text. On Saturday we joked that we would see each other in a week because our week was going to be hectic. Some days I see Avery for a brief moment and that is it.  All of it is A LOT! Yet I wouldn’t trade any of it as long as I have my boy.

Today was a neurology appointment. It went well. Ethan’s strength is good on both his left and right side. The only physical residual affects are that the left side of his face is a little droopy, his fingertips sometimes feel numb and he gets food caught in his mouth on the left side due to lack of sensation. Those are fantastic odds. Neurology is concerned that Ethan may have to be on anti seizure medication long term. Hey, if that controls the seizures, who cares? The medication seems to be working and stopping the cycle for  more seizures aka brain trauma.

Ethan’s anemia has been kicking his butt the last few days. He is struggling to keep his eyes open. He told me earlier he was focusing on eating and that was about all he had energy for. We are working on it with Ethan’s dialysis nurse and nephrologist. 

As much as things are overwhelming, it seems that life always presents little sparkles of joy.  For me it is usually in the form of animal antics. I saw a bird skipping along, playing in a puddle today. Just taking a bath and getting water all over itself on this hot day. The puddle was its water park.

As much as I have complained, I have had the opportunity to have several meaningful chats with Ethan in the last few days. My relationship has changed with him. While it was not bad before transplant, I know him so much better now.  I am thankful for that too. 

While I feel like I am in a shit hurricane, I know it will pass. I know I am grieving my old life that was much simpler. It just seems like time is standing still and taking forever. I hope my aging process stands still too…. Ha ha.