Thursday, August 18, 2011

Update.....


























So wonderful news all Raygen's test are negative. She still isn't her happy self yet but I think she is getting there. They still think that she has a small cold that she is working through. She has been on room air since 2am and she is doing awesome so far. Her oxygen is staying in "her normal range" of 75 to 80. The cardio docs also agreed that she no longer needs to have two shots of day for her blood clots. The ultrasound that she had done on Monday showed that the two in her right leg are gone and the one in her next may be gone but since she has been on a blood thinner for 14 weeks they agree that it is safer to have her off of it. This will make home so much better I am always so worried about any bumps to her being on blood thinner because the littlest bump could make her bleed inside and we wouldn't know. Plus we don't have to give her shots :) Her GI test was undetermined since she spit up early on in the test they were not able to get any results, which is okay. We have decided to put her feeding issues on hold till after her glenn. The docs plans are now to watch her today and over night with a possibly going home tomorrow. We will probably come back to Children's in two weeks for her heart cath and possible G tube placement (this would replace the feeding tube in her nose & go directly in her in stomach.) The G tube is probably the best route for Raygen because we know even if the trach comes out soon she probably will need some support till she learns to feed on her own. They are thinking the Glenn in late September early October. The good news is before the Glenn they will do a vocal cord scope and see if it will be possible for her to breathe on her own without the trach so we can possibly loose the trach before the glenn, which would be a huge blessing and a huge plus for Raygen. This would open so many doors for her if her vocal cords were working again. The glenn is coming so fast and it's crazy to think we will be back here again in two weeks. Please continue to pray for Raygen, that she continues to heal from her cold and that she doesn't need any oxygen support. I just want our happy, smiling, baby back and home. Also please pray for big sister Zoie. This is all so hard on her and she is always so worried about Raygen. I miss her so much. Thank you all for your prayers and support. I will keep you posted. By the way we downloaded Sesame Street on Randy's I pod and that is what she is watching in the picture, lol!