2/3 7:00 pm

Last night went well. Ethan’s mood changed as the evening went on. His nurse helped a lot. People stopping by the room helped a lot.  He also had his medication modified a little to support him.

Ethan had his bath in what he would consider an appropriate time frame, even though his bath time the night before was just fine. This kept him less agitated.

He really hates that he can’t drink or eat yet. He has been chomping on some ice. His mom may or may not have found a way to get him the coveted popsicle 2 nights ago. He may or may not have had it and thought it was soooo gooood! I will neither confirm, nor deny anything regarding the popsicle situation.

I woke up this morning with alarms sounding. I sit up and there are several people out side our room as long as one of the doctors trying to draw blood on Ethan’s feet. WTF?

“What’s going on?” I say but can barely hear myself over the obnoxious, kiss your ass goodbye, urgent, panic inducing alarm is going off.

They explained that Ethan’s blood pressure had dipped low. Like 60/30. They were taking a blood sample for a blood culture. I think everyone panicked and they were being thorough because it was Ethan, as well as the events that unfolded the other day. 

Turns out after all the hub bub died down, they think Ethan was in a really deep sleep. As soon as they woke him up his pressures were within normal limits within about 30 seconds. He also has done this a couple times where he was in the hospital and the alarms go off at night because his blood pressure was low.

However, it was enough for Ethan to think he was dying and be terribly stressed.  This poor kid.  A couple of people on the team told Ethan and myself what they were thinking which was nice to involve Ethan in what is going on. It also allows him to ask questions so he can understand what is going on.

Ethan later was talking. His voice was weak and quiet. I told him the only way the speech and swallow lady (which we deemed a terrible title for any woman to have as it sounds a bit foul) (the name speech and swallow lady also opens the door to so many jokes I could spit out like a machine gun but I won’t.) would agree to let him have something other than ice chips, was if he could prove his voice was getting better. Like 10 minutes later, one of his doctors walked it. He thought it was the speech and swallow lady.

“HI” he said so loudly.

She, having no idea he was trying so hard said “good morning.” She maintained her regular volume and Ethan continued his outside voice.

They talked for a bit and he asked her if he could have some ice water. She said he would have to wait for the speech and swallow lady to evaluate him. He was so confused. I told him that wasn’t the right lady. He was convinced I was wrong, but I wasn’t.

I pulled the nurse aside to find out what time the speech and swallow lady was coming and to let me know because he will project his voice to show how well he is doing.  This seemed to work because when she came, she was impressed with his volume.

She then told him that he was doing so well that he could have either a little bit of yogurt or a little bit of apple sauce.  He chose yogurt. He had 5 decent bites and totally enjoyed every single one. He can’t manage silverware on his own so he has to be spoon fed.

“It’s so good.” He said when he got a bite of it. He also said he was craving ice water and milk. Both were Pooh poohed by the speech and swallow lady.

Then we had rounds. Ethan is being weaned off another medication. And one was discontinued over night. Woo hoo!

PT/OT came and put Ethan in a wheel chair. He got to sit and look out the window which he loved. We talked about how he loves winter and is sad he can’t be home.

He then asked me to shave his beard and pedophile mustache.

I channeled my inner barber and used my heart clippers to give him a shave. Again, he is smiling like this because his muscles are so weak.

While in the chair Ethan opened his Christmas presents. It was a struggle for him because his tremor is so severe. It was really good PT. 

We then read some more in the blog and he really seems so interested. He likes it too which makes my heart happy. 

After about an hour and a half, he got back in the bed and was tired. He had some more popsicle (no idea where it cam from) and was visited by multiple people. Psyche, wound care, he had many dressing changes on his dialysis access.  Also Janice came down and we were doing a Lasix challenge. He also had an echo and EKG. 

I counted his pumps today.  He is down to 6 pumps. 3 of them are for feeds, three are medications. We were talking about his 6 pumps excitedly and he wanted to know why. I told him that he used to have 19 pumps. Wow!

Ethan tried eating some applesauce. He was a little disappointed in the taste. He said “it’s not as good as Mema’s applesauce.......do you think she will make me some when I get home?” I told him that she would make him his own batch and she would be thrilled to do it. 

We have had some big wins today. I enjoyed our busy day hanging out.