7/12

Today was a big day in the Diiulio house. Avery took her permit test online. It was a bit of a shit show as the two little dogs decided to fake fight on top of Avery while she was taking her test. The fake fight turned real after one played a little too rough. We were laughing at the situation while Avery “just kept swimming” through her test and worked her way to a 100%. Nice job kid!

The dialysis machine was close to being run over with my van….multiple times “accidentally”. Last night I tried to make a new batch of  dialysate (solution that cleans Ethan’s blood). It takes 7 hours until it’s ready. Those are not 7 of my hours, the machine does all the work. Around  midnight I woke up to the machine alarming. Really?

For some reason I carefully tip toed through Ethan’s room so I wouldn’t wake him up even though his machine was making an ear piercing steady and screaming alarm.

I did some trouble shooting and cleared the alarm. I laid back down….the machine screamed “NOPE!” I went back in and tried to trouble shooting again in the dark. After 2 more trips into the room over a two hour period. I then just decided to drain it and start over. Draining takes about 3 hours or so. 

I woke up again a while later as one of the dogs was barking….it was dingbat Penny. She barks at paint drying sometimes. So I got up and let her out. I thought about not letting her back in….but she’s cute….and we love her despite her low iq.

So today was a fun challenge of being tired with a sore back. I am sure I was just a breath of fresh air all day long.

I started thinking what a pain in the ass this home dialysis is. It is so time consuming. It is now creeping into my sleep time.

I came home at lunch time and started making a new batch around noon.  7 hours later….THE SAME damn thing happened. I got the same alarm. I called the technical support hotline and they determined I loaded the wrong sak type into the machine. How did I even get the wrong kind? So now I have two saks. (How do I even keep a straight face with that statement).

After struggling through this in the middle of the night and even this evening, I thought about how grateful I was to have the opportunity to do dialysis on Ethan. To listen to his laugh and watch him work towards his goals…..it brings calmness, peace and perspective. (And maybe some swearing)

After struggling through this nonsense, I could just throw my hands up and say “no more”. Ethan could go and get dialysis done at a center. The beauty of doing it at home offers is to be able to travel on our terms. Do what we want, when we want. Be able to flip hell off and say….”we see your renal failure, and raise it to still functioning and having fun, renal failure”. We don’t have to go to a new center all the time while traveling. We don’t have to have the headache of finding a place and driving to it, making sure there are no screw ups. Less room for human error. We can still camp. We can plan activities around dialysis. Let’s face it, dialysis isn’t convenient for anyone. But at least we can work it into our lives on our terms. There is light at the end of the tunnel. Take that hell, dialysis was Lakeside last week. Dialysis with a view.

While all of this was going on, Paul shared that he felt like he had gotten into the poison ivy somehow. His face has started swelling, the waistband on his pants line has turned red and itchy and it is sinking it’s talons into Paul’s undercarriage 😩. The doctors office was going to have him wait a full 24 hours prior to appointment. Paul ended up going to urgent care. He left in less than 30 minutes. Way better than waiting 24 hours to get things checked out. What was he doing out in the yard????? That will forever be my question. Ha ha.

That was enough excitement for 2 weeks.