2/11 7:35 pm

 

Today is going to be a big day.  Ethan is supposed to have a diuretic challenge. Ethan will be disconnected from Janice. I had a chat with Ethan’s kidney. It just has to prove it can make enough urine to switch Ethan over to HD or hemodialysis. We need to wake this kidney up because it has an important job to do. 

Then his renal doctor came in and said she was not going to challenge him at this point. They know he is in kidney failure and are going to just keep going with continuous dialysis until they can get his fluid amounts going in, reduced. She said that it doesn’t make sense to put him on HD if he is taking in a large amount of volume because he would continuously be fluctuating with fluid in his heart, lungs and body and stress the kidney.

So now I am trying to get him off IV feeds which will reduce a significant amount of fluid going in. Now that Ethan is eating more, he can handle this.

At some point this morning he has to have his nasal gastric tube backed up a bit more and then have another X-ray.  He lost another pump and is down to 4. Four pumps.  Wow!  3 of which are feeding pumps and one is blood thinner.

All of his other medication is given in his feeding tube. 

I found out today there is a patient on the floor that either has or their caregiver has Covid. I was under the impression covid patients weren’t in this hospital. Not sure what the story is there. Of course I can’t ask for details because that is not allowed. However, I can overhear things and make educated guesses and know exactly which room it is. The one with the big sign that says ISOLATION and there is a pole with several pumps outside the door. 

Here is the kicker, someone from that room used the bathroom, the one that 15 parents are sharing for showers and brushing teeth and changing. I am a bit annoyed that this person was allowed to use the bathroom. Now no-one can use the bathroom until it is clean. Plus I envision this contagious person walking down the hall like pig pen from the Peanuts cartoon. Except it isn’t dirt swirling around them and lading everywhere, it is viruses and germs that can kill my kid. No pressure. So now I am continuously wiping the floor with bleach cleaning pads after people walk in, cleaning my shoes anytime I leave etc. I might need mental help.

The request to have it cleaned was put in two hours ago but I still am waiting just to take a shower. Cant they keep that person in their room and bring a toilet to them? They can wash in their room like Ethan has to? I likely don’t understand all that is involved but I am a bit annoyed as I have to walk around in my PJ’s, mid morning, with unwashed bed head, oily face, Unbrushed teeth.....in my mask. Ugh! I am disgusted with myself. I asked the nurse if there was any other spot I could shower. I can’t be the only parent that is not ok with this. Also, should the nurse be dealing with that? Hell no. Their job is to meet the needs of my kid, no me. They work so hard already, some having two kids they are juggling. 

I went down a couple floors where I know there is a shower in a common area. I had to wait for the bathroom as someone was in there.  A man came out and I went in. The seat on the toilet was up and there was per under the toilet.  It seems he was dehydrated because it was dark yellow. When he washed his hands, I am not quite sure what his technique was, but there was water all over the sink, mirror and floor.  What happened in here?

The bathroom is quite small and you could almost poop and shower at the same time because the toilet is so close to the shower. There is no shower curtain. There are no hooks to hang a towel on. Nothing to set your clothes on. Not ideal...at all. I had to get creative.

I became bitter and angry at my situation. How freaking annoying. I had to hang my towels on the handicapped railing that people sitting on the toilet have had their toilety hands on.  I wiped it down with as much hand soap and scrubbed it first but still wanted to puke as i knew the towel was going to touch the wall.

I hung my toiletries bag on the door handle and had to balance my Pjs and clean clothes it it. I turned the water on in the shower and their are two shower heads. One is a hand held that you can sit on a shower bench and shower. The shower bench.  Where everyone’s bits and nuggets have slopped all over. Excuse me while I spit out the vomit in my mouth. I turned on the shower and the handheld shower head turned on. There must have been sludge in it. So not all the holes in the shower head were able to pass water.  To compensate from that pressure,  a large steam of water was shooting out the side, going rogue, with Niagara Falls style pressure.  The large hose of water was shooting across the small room....right onto my flipping clothes. I screamed the F word in my head. As I am fumbling and trying to save my clothes, someone knocks on the door and says....”excuse me....you aren’t supposed to shower in there”. I saw firery hell colored red. The steam that people thought was coming from the shower, was steam full of anger coming from every orifice of my body.

I didn’t respond to them, because I didn’t have anything nice to say. Nothing even polite or matter of fact. I was ready to explode and implode at the same time which was going to be a real mess.

I took the fastest, most awful shower while thinking about why I shouldn’t be this mad. I just stewed in anger and swear words. There were two different knocks on the door. I didn’t even respond to them because clearly the shower was running and if they didn’t have enough common sense to deduct someone was in there, me saying “someone is in here” also wouldn’t be helpful for them.

The bathroom was covered in puddles of water from no shower curtain. I was the asshole now leaving the bathroom a mess. As I was putting on my wet clothes I reached to grab something from the bag I hung on the door handle. The door popped open and I was struggling to clothes it as I was buck naked. I scrambled to close it and all my stuff fell out of my shower bag onto the floor. I almost started to cry.

I can’t wait to go home. I realized that my shower is my framework to start my day. Today’s framework was horribly unsteady. My morning framework is also coffee. I am not overly

I left that bathroom and made eye contact with every person in the room almost to date them to say something. Luckily no one did. 

I was cranky. I went back to the room and showered Ethan with all of my venting of my experience. He offered to give me a hug and I took that opportunity. As we sat there hugging, my mood softened a bit. This is a kid that has to lay in bed and have two people bathe him daily. What am I even bitching about? I was so thankful for him taking pity on me and giving me a hug. I was going to need some extra Vaseline to remove my head from my ass on this one.

I mulled over my options.  I decided that I will control what I can. The shower is usually open in the evenings. I may just shower at night and then if this germ and virus infested person uses the bathroom I have other options to change and brush my teeth. I also decided I was just feeling tired today and that probably isn’t helping me.

Around 2:30, the blasted sign was still up. Apparently I am the only parent that has had an issue with the bathroom. I finally asked the lady in charge (who is like the nicest person ever) about the sign and cleanliness of the bathroom. The people came to clean it and never took down the sign. Are you kidding me?

PT/OT came and did the most wonderful thing today. They came with their comedy routine, but it was I that had the last laugh. As they were planning out what was going to happen, they were assigning roles as to what everyone was going to do to facilitate. The PT car buddy looked at me and said “Mom, I want you in charge of the pole.” I whipped my head around so fast and accusing said “have you been stalking my social media?” He kind of looked at me dumbfounded and shocked. “No....wha.....” I cut him off and said “how do you know about my previous pole experience? Those days are long over.” I totally got him. Then I hear one of the ladies say “wait, you used to be a stripper?” “No...ha ha just messing with you guys” I said. I gave everyone a good laugh. And yet again...I laughed at my own stupid joke. My reward was their faces.

Ethan stood up today and with assistance, he took his first steps all over again. Wow! So surreal! He walked across the room slowly, one foot after another, shakily placing them on the floor. He had PT on one side and OT on the other. He was very uneasy and not balanced.  He would not have done it without help. They made him do another pass across the room. Slow and steady. Then they decided to have Ethan walk down a hallway, past multiple rooms. People were cheering and clapping for him. As he rounded the corner, all the doctors were standing outside of another patients room. Ethan waved at them. They were so happy to see him up. His posture was getting better and his balance was evening out. He was tired and wanted to sit (we had his wheelchair) we urged him to continue back to the room and cheered him on the whole way! We have waited so long for this day. He pushed through and kicked ass all the way back to the room. He did it.

He sat up in the wheel chair and ate his lunch and took a decent nap.  He stayed in the chair about 4 hours and was able to sit in the sun and overlook downtown.

He had an echo to see where things stand with his heart being off the heart failure support medication yesterday. Hopefully his heart has progressed and deemed more healthy than the echo prior.

I saw my RT buddy for the first time in a week. He found us since we have moved. I thought that was nice. He’s on a different floor these days.

Dinner came and it was the same thing he had last night. They are cycling through like 3 meals for him.

I could see the let down on his face. His nurse asked him if she could get him something different like chicken tenders. He said he wanted to try them and she magically made them appear for him 10 minutes later, with French fries. Ethan was so grateful.

Janice goes up a little later tonight. Today, despite my shower situation, was a great day. By the way covid kid is gone. Like not dead but not on the floor anymore. Glad our room is pressurized to keep Ethan safe.

My bright spot today was a quiet moment shared with Ethan. He reached out to signal he wanted a hug. I went to hug him and he said “thank you so much for everything you have done for me.” I looked at him and told him I was thankful I was able to be able to still have him around to be able to help.