3/11 (I was sleep typing if you read this and it made no sense at the end)

Midnight, 6 hours late, is when Ethan had his ultrasound. He was never taken for MRI because they couldn’t get clarification on the orders. Needless to say, we didn’t get restful sleep.

Ethan was woken up this morning with a blood draw. Then he got his vitals, then an exam followed by 2 mouthfuls of medication. Then I brushed his teeth and his hair. We didn’t get to change his clothes before he was taken away for MRI which we found out about as I was brushing his teeth.  They took him away so quick that we had forgotten to take his EKG leads off. Those you don’t want in an MRI. Ethan made them bring him back because he wanted ME to take them off.

I removed them carefully with lots of adhesive remover because they have pulled his skin off and bled in the past. They took his back down. As he left, the team had already gathered around our room to do rounds. Ugh!

After rounds, the kidney team came in to make sure it was ok with me to use contrast for Ethan’s MRI. He had just been sitting somewhere until the approval from the kidney team. The benefits outweighed the risks and the MRI was able to proceed. The kidney team also encouraged me to list Ethan as a kidney transplant recipient on their website.  So I gathered all the information for that and finished that task. 

I was able to tidy the room for a hot minute and then had to reschedule PT/OT because Ethan wasn’t back in time for his appointment. The neuro team showed up as Ethan arrived back in the room. They had about 15 people with them. NOPE! I am far to introverted for that. I chased all but 3 out. We AREN’T doing that. I can’t emotionally handle that many strangers in one spot. The third one looked at me with pleading eyes and asked “is it ok if I stay?” I paused for a moment and actually thought about it for a minute.  “Fine. You can stay.” I get like a jerk but I also have to protect my own sanity.  

I was already pissed they didn’t show up yesterday. So I started off pissed. Not good. They listen to me whine and complain about lack of communication and then we discussed the cyst. They will go over MRI results tomorrow. They didn’t seem overly concerned. Good. T

The psych team showed up as the neurology team was leaving. Ethan was less than sharing stating he doesn’t like to share his feelings. They did stay and listen to me bitch for a while.

While psych was in the middle of talking to us, some guy walked in and said “is now a good time?”

“No! No it isn’t.” I left it at that. Can’t he see we are busy? Really? Did he even have to ask? This drives me crazy.  He never came back for the rest of the day. He looked familiar but I can’t remember what team he is with.

Lunch came and Ethan ate quickly. I knew our appointment had been rescheduled to 1:30 for PT/OT. It was 1:25. I had Ethan ready to go outside and prepared to attack anyone that came by our room. 1:30pm came and went. 1:31.....I slapped a premise sign on the door saying “we are in the courtyard until 2:00pm” knowing PT/OT would meet us there but no one else would. As we walked to the elevators we ran into OT. She texted PT. I word vomited that we had to be back to the room by 2:00 because a televised interactive BINGO game was going to be played. 

Ethan walked with and without the walker. He went up and down stairs and a steep ramp. He cruised around the court yard until it was close to 2:00.

We parted ways from OT. She went to a different floor. Cardiology met us in the hall and followed us back to the room. I chatted with them as Ethan tried to win. As soon as they left, I hung a sign on the door that said “Privacy Please” and drew the curtain in our room closed so no one could see what was happening in our room.

If you won this bingo, you won real prizes. I am competitive. I wanted to play too. Apparently you have to be sick to play. What a stupid rule. I wanted to steal the real prizes out of the sick kids hands. Just kidding (sort of). I sat next to Ethan for moral support as he played. He ended up winning. He won some hot wheels and a kit that he can build that has a little motorized vehicle in it. He was all excited.

We went for another walk in the courtyard. It was right after I ordered dinner. Actually I walked and he rode in the wheel chair. We enjoyed seeing more flowers peeking out at us as well as buds on the trees. 

Dinner arrived early and I had to run with Ethan up all the wheelchair ramps to get back in the building to get to the lobby and pick up our dinner. I was out of breath. I parked Ethan in the lobby and just left him there as I grabbed dinner.

We ate and enjoyed a nice quiet evening. No interruptions. Phew!

Tomorrow is a new day. We will see what it brings us. I am glad it is the end of the week.