Monday, August 15, 2011

Scary Nights and Long Days

So here's the update so far....
Last night Raygen had a hard time keeping her oxygen stats above 75% so after twenty minutes I called our cardio doc and he thought since we adjusted the feed on Saturday to pause it for an hour to see if she improved. She didn't. So we had to give her oxygen, it's the first time I can say I noticed her being "blue" or "dusky" her lips especially. The oxygen did help and when we headed to the doc this morning she didn't need any on the drive up. We stopped by the cardio doc for a few minutes before Raygen's GI test so he could get a peak at her. He decided that later today he wanted an echo and an ekg. Raygen did well through her gastric emptying study and I was quickly able to replace the feeding tube. She did well with her blood draw and it took only one poke. She then had an echo and ekg, which as far as we know looked good. Then lastly Raygen had an ultrasound of her arms and legs to check for blood clots (last we knew she had 3, 2 in her right leg and 1 in her right arm. She gets two shots a day for this.) We have no results as of now of her blood work, GI test, and ultrasound.
Raygen's cardio doc thinks that she is just getting ready for her Glenn. Dr. Park is thinking to schedule her heart cath in the next two weeks with the Glenn happening maybe more like October then November. I'm so nervous. The heart cath means another procedure, iv's, and maybe a night or two in the hospital.
We should know all the results of all her test hopefully sometime tomorrow and have a date for her heart cath.
Since we left home today at 6am and just got home around 5pm and going on 3 hours of so so sleep I'm so exhausted, but watching my beautiful baby sleeping at home is what I focus on. She is on oxygen as we speak but we will see if she needs it when she wakes up. I just pray she gets some good needed sleep tonight and continues to grow and get stronger because the bigger she is the better. Thank you everyone for all your prayers and well wishes. I will post as soon as I get some test results tomorrow.