Friday, January 6, 2012

Worn Out


video


Listen to the cutest little noises Raygen makes when she is sleeping. She does this all night too. So sweet. So we had 3 doctor appointments this week so we've been pretty busy. We get next week off and then we have appointments every week for a good month. I hope Raygen learns to really love car rides :) Plus, Raygen has been off oxygen for almost 24 hours and she's doing great!!!! Keep your fingers crossed!
So first we went and saw the trake doc. He said that she doesn't breathe completely normal due to one vocal cord still being paralyzed but he said it looks like she is doing good so he wasn't going to change anything. We will see him again in a year to check and see if her vocal cord is still not working.
Then we saw Dr. Park our Cardio doc. Raygen had an echo and ekg. He said everything looked good and he wasn't going to change her lasix (help her pee) or her blood pressure medicine yet. He did have us schedule a test in Tacoma to check the pressures in her lungs. She will need an iv for this and they put dye in her system then take pictures of her lungs. This will give us some base numbers to go off. So every few months we will repeat the lung test and if the numbers change it will be a sign that her stent needs to be widen which would mean we would go back to Children's to the cath lab. We will see Dr. Park again in a couple weeks.
Today we saw Dr. Polley Raygen's pediatrician. We just love her. She said Raygen looked great! So what a wonderful week, busy, but wonderful!
So moving forward we have Raygen's lung test which I'm nervous about. Any test that involves iv's makes me nervous. She will need to have some blood work done as well. We have her 6 months shots plus flu vaccine and Synagis shot coming up. We also have a GI doc appointment a oral therapy appointment and she will also start physical therapy in February. Man, she is a full time job! She is so worth it.
I'll keep you posted!

Erin