💪🏻8/18

 I woke up to my relaxing day off, completely exhausted this morning. It’s weird, I had no trouble falling or staying asleep. I am not even sure I moved and for all I know, could have stopped breathing. I woke up and dragged my butt to find and say hello to my morning friend, coffee. Unfortunately it was more of a hello grunt. My eyes felt heavy and puffy. 

I looked in the mirror. What the heck to I do in my sleep? My hair was looking like crusty the clown. I had two weeks worth of baggage under my eyes. Somehow I was missing an earring. Gorgeous.

I wondered how I was going to make it through the day.

I started preparing for my meeting tomorrow with SSI, gathering all the stuff they asked for and placing it in one spot.

Soon after, Ethan and I were on our way for our medical appointment extravaganza. The first appointment, the lab, at Strong. Turns out, I was doing better than the phlebotomist. She was out of sorts, disheveled and doing a lot of breathing and talking to herself.  Oh boy.

She had Ethan make a fist. His vein stood up like a fire hose blasting off his arm. NASA could see this thing from Mars. She even marveled at the size. She took her needle out and went about 6 inches up on Ethan’s forearm towards his wrist and poked a vein that was hardly even visible. What the …….

She then had to fish around for a bit. Ethan and I exchanged awkward glances and there was nothing I could do to help. Just why? Why?

After he suffered through that agonizing draw that took what seemed like forever, we then headed to his back to back ultrasound appointments. They looked for clots in Ethan’s neck, where his catheter sits as well as they imaged his fistula and looked for clots there as well.

They are looking for clots because that would be one reason his platelets could be so low. Luckily, no clots were found.

The other troubleshooting that has been done regarding Ethan’s low platelets is that we discontinued one of Ethan’s medications known to cause low platelets.  That medication was discontinued almost 2 weeks ago. Since that time, Ethan’s platelets have doubled. Yeah! So it is likely a medication issue and we can move forward.

Onto the next appointment which was with nephrology. Ethan’s blood values are improving. His anemia is being managed well and his iron has come up considerably. We will continue with weekly infusions. Ethan feels good so that is a win.

I had my meeting with social work and then it was onto the pediatrician. We had to have a visit to follow up with anxiety medication. Ethan feels his anxiety is controlled and his spirits are up. So this appointment was a breeze.

I had set up the dialysis machine before we left for the pediatrician. As soon as we got home, I hooked Ethan up and he was getting his blood cleaned and excess water removed in a jiffy.

We talked a lot today about planning for next week and getting himself ready to attend college. I told him what he had left to do and am going to have him plan the rest out. This will take some things off my plate, which is spilling over right now.

One of the questions I was asked today was “have you had a breakdown yet?”

I was close last night, to having a full blown temper tantrum, but not a breakdown. The language in my head was reminiscent of a drunken truck driving pirate. I was so tired and crabby and hated everyone, including being around myself. Sometimes it is hard to portray ok, when you aren’t feeling especially ok.

As far as the breakdown….I still don’t think I have allowed enough time to let sink in the trauma that was endured. The best way I can describe the last several months is that I am in a never ending game of dodgeball. I am constantly on guard for the next ball to fly at me. I can catch it, dodge it or let it hit me. As long as they don’t hit me, I can keep moving forward. If you let your guard down, that’s when you get hit.   I am not able to do that yet.

The dialysis machine was kind tonight. It minded it’s business and got the job done with no complaints. Ethan’s blood pressure was a little low but nothing terrible. I just make sure when he stands up, I am there to catch him if he feels faint. So far he is a tank and plows through. Shocking.

Tomorrow I am hoping to feel a bit more rested. The long days with dialysis afterward drone on. I keep telling myself the more treatments we do, means the closer we get to the end. There is light at the end of the tunnel.