What a day yesterday. Claire, Amanda, and I headed to Durham for Claire's 1st annual cardiology checkup. Let's just say it has not gotten easier with time. Number 1, I was stressed out thinking what could have happened or not happened in a year. Number 2, Claire is a million times stronger than she ever was.
We went to the ICN first to visit Nurse Susannah. This was one of the few highlights of the day!
To say the least, they should have listened to me and sedated her for an echo. We got to the echo room and the echo tech immediately was like, ok this will not work. So he went out and got 2 other techs. While he blew bubbles, turned Elmo on, and the other tech danced with 2 stuffed animals, the third tech tried to do the echo. I had Claire between my legs on the bed with my legs wrapped around hers and my arms holding her arms as she twisted and screamed. Torture for her. They maybe got 2 pictures of her heart. Done.
We then headed upstairs for the appointment. Claire was running through the waiting area yelling "boys!" at any child she saw. Having a blast. But then we tried to get her to stop running and that ruined her day. I took her to the bathroom hoping she would calm down as we were being stared at by everyone. Then the ultimate scary thing happened. The automatic paper towel dispenser went off. Claire literally started shaking and ran screaming towards the door! I felt horrible!
Then here came the attempted weight and height and blood pressure. One out of three got done - weight. The assistant decided against attempting the height and blood pressure. I am sure the BP would have been sky high.
Now the EKG. Yeah right was all I could say. They tried sticking the stickers and wires on her as I held her arms and Amanda held Claire's legs. No way was that happening. So no EKG.
They put is in an exam room and turned out the lights to hopefully calm Claire down. To get her height, we had to lay Claire on the exam table paper and mark her head and feet with a pen so the nurse could use a tape measure to get the height.
Claire finally cried herself to sleep in my arms. So the cardiologist was able to really listen to her heart in which I was glad. She was out like a light so he got to listen a long time.
Basically, her heart is the same. Still pulmonary valve leakage, still "turbulence" where the muscle and tissue is in front of her pulmonary artery, still a murmur. The right side of her heart function looked good. So she is good to go again until next year.
To top off the day, we met Dr. Rachel at Firehouse Subs for lunch! It was so nice to visit outside of the hospital. So the highlights of the day were seeing Nurse Susannah, getting a good heart report, and seeing Dr. Rachel. :)
On another note, Jax is off the ventilator, backing off pain meds, and doing really good! He has no leukemia in his cells or blood as of yesterday! And his momma is getting to hold him today for the first time in almost 2 weeks. Jax will hopefully get to come home in the next week or 2! Thank you for the continued prayers for this miracle child.
The Scott Family