I’m almost embarrassed to have to write the same thing today: Good morning Wyandotte. Sleep? Amanda is doing well. Don’t know her CO2 level yet today. Ham and cheese omelet for breakfast. No word on a bed from Children’s.

Ted stopped by this morning for a few minutes – just checking on his girls I guess. He is off to Mansfield, Ohio for the day. This is the second night in a row that I spent here – and now here for the day. I did that so Ted can do tonight and I can sleep at home and then go to work tomorrow. I had to cancel my work days the past 2 weeks – and I like my job! – and I told Ted I really wanted to work tomorrow. He will stay tonight and be here tomorrow until I get off work.

And, yes, Amanda is well and alert and doing good but, yes we need to be here for her. Several times she has had breathing treatments and the respiratory therapists forget to put her oxygen canula back on her. Amanda can’t always reach it nor position it on her face by herself. Last night she was probably woken up 3 times and then needed to blow her nose and get a drink – all challenging for her to do because she either can’t reach what she wants or can’t manipulate things because of IV tubing and pulse ox monitor on her finger. When they woke her up at 5:30, she was awake and wanted to get up. The nurse was going to get her up. However, Amanda sleeps with bi-pap and they have been playing with her settings and I remember the doctor saying that he wanted her CO2 checked first thing in the morning while she was still on bi-pap. Once she’s up we switch to the little nose thingy for oxygen. If the nurse would have gotten her up and then the blood draw person show up then the doctor would not have gotten the blood test results he wanted. I had to tell the nurse that – and she was like “Oh … I’m glad you told me” and she didn’t even have the order to do the CO2 blood test. We kept Amanda’s bi-pap on her and the nurse got the order for the blood work and we finally got her up after the blood draw. More fyi for you – a new doctor came in yesterday and didn’t like her high heart rate and immediately wanted to order her to be put on Lopressor – a cardiac drug. Probably would’ve happened if I hadn’t spoken up and told him what her heart rate usually is and how the other doctors specifically said to be sure NOT to put her on Lopressor or any cardiac drugs. So – yes – Amanda is bright and alert and sociable. But, we need to be her advocate and spokesperson for the other stuff. She isn’t crying when we leave the room, in fact she will tell me to go take a walk, get a cup of coffee, or go downstairs and browse the gift shop. We have to be here for her.

I have had email contact with the clinical nurse at Children’s today and she is having the people on her end call here for an update on Amanda and she gave me a number for the doctor here to call to give a push on our end. Let’s hope the push from both ends means a connection is made and we can get moving out of here today.

Thanks for reading.

just Laurel