Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Friday, January 4, 2008

cough and sputter

Alex was successfully extubated yesterday.. He is really junky sounding though. He had a pretty good night, but his head aches are tricky and we sit in a dark room and wh isper to make it a little nicer for him. He has had a really slow day today. He won't go pee pee so they had to put him on a dose of Diurell because they think he is so used to the Lasix that it isn't doing it for him. His blood pressure has been a little high today but he did get his cath out today and also his line that was in his neck. I think that it made him a little more comfortable to have them out. He looks a little blue on his upper half and I am a constant worry that Chylo will return... I have asked so many people and they are not totally sure that it won't. He started eating today so I will be watching him like a hawk. He is expecting to see his big sister today.. if only for two minutes. They are making special allowances to have her in for a few minutes.... I understand the RSV risks too!!! so this will just be a quicky.. So we are learning more and more of what his surgery was like.. these are the things that happened.... he had the bidirectional Glenn, he had right and left pulmonary artery reconstruction using a little patch to make it bigger, they took away the little Sano conduit, he had his tricuspid repaired (which still leaks a little bit) But will hopefully get better over time. and because he was having a hard time he had a cutdown and some lines placed in his neck.... I am amazed that they can go through so much, so days like today is expected..


Anonymous said...

You guys are in our thoughts and prayers, hang in there.

Anonymous said...

That is so much to go through. I am glad you and Jeff are holding up good. I hope you enjoyed dinner with your Family. LYL!!!

Anonymous said...

I am so glad that Alex was able to get that stinkin' tube out of his throat and am even more glad that he was able to see Ryleigh. We love yall.