Surgery Day! Fo real this time! =)

Well today has been busy busy! Greyson went to surgery to have a feeding tube placed and get tubes in his ears. He ended going around 8:30am Paul and I were once again rushing to get there! Paul was driving from Huntsville but we both made it in time to help load him up and walk down with him! He was in a great mood! We were all back in his room by noon. Everything went the way it was supposed to. He was still pretty out of it when he got back but it didn't take long at all before he started waking up! He was awake and watching his favorite sesame street movie trying to get his hands in his mouth after a few minutes. Thank you all for keeping us in your prayers! Were definitely headed in the right direction! The next step will be to get him on a home vent and they'll probably move us out of the nicu =( to the pulmonary floor for all of our training and whatever else Greyson will have to do before they'll let him go home. Hopefully his recovery today wont be bad! He didn't seem to be in much pain but I guess time will tell =) Keep those prayers coming! Were getting there!

 Starting to wake up

 Gettin some lovin'

 All back to normal! =)

Little Romeo =)

Happy Valentine's Day! Greyson is doing pretty good! Hasn't run a fever since friday but he has been junky like he's caught a cold. Could still be teething but I think it's probably a little more than that. Thankfully we haven't had to go up on oxygen or vent settings so he seems to be holding his own pretty well right now. Not sure when they'll reschedule his surgery but it probably won't be right away. My sister made Grey a cutie patootie onsies for valentines day, had to get some pictures in it =)

  My Valentines!

 Gettin some sugar 

 Romeo

Red light, Green light

Well what a crazy crazy morning! First off they told us surgery wouldn't be until 9 or 10 this morning. Well if we've figured out one thing since being here it's that surgery is never when they say it will be. Usually later than they tell u. So Paul and I planned to get there at 9 as usual figuring we'd be there all day. Well I get a call at 8:15 from our nurse saying surgery is ready for him! So Paul and I fly over there and turns out surgery had canceled his surgery because his sodium level was too low. It was 127 they wanted it to be 130. Seriously?! So our practitioner talked to the anesthesiologist and told him this is always something we deal with with Grey and to let us try to get it back up by noon. He agreed. So by 11:30 sodium level was 131! Yay! Surgery said great, get his vitals and send him down. So I'm changing his diaper and Paul is taking his temp, our nurse is getting his blood pressure. Everything's great except its taking Paul forever to get his temp because it keeps going up!! He's running a fever!!! Ugh! Needless to say no surgery today! =( I definitely think its meant to be! We're hoping maybe he's just teething but they are running more labs to see if anything shows up. Besides the fever he's acting fine. As you can see from the picture. Being really sweet. His satts are great, actually down on his oxygen from yesterday. So I guess we'll see. Keep him in your prayers! Hopefully we'll be able to reschedule it soon.     

Surgery

Surgery is planned for tomorrow morning 2/11 at around 9 or 10 am! Keep us in your prayers. Greyson will be having a g-tube placed and tubes put in his ears. They have told us these are pretty minor surgeries but the g-tube might be tricky for Greyson because of his lack of stomach muscles and the fact that the g-tube is inserted and attached to the stomach muscles. Hopefully all will go well and it will work properly! The g-tube is how he will get fed. Instead of that yellow tube on his face, he'll have a small port in his belly where the tube will go for his food. This is just one step closer to getting us home! They've told me it's very simple to operate and maintain ;) we'll see! It will be nice to kiss those cheeks without tape on them! :)

It's been a crazy couple of weeks! We thought that Greyson had caught the flu the weekend before last but everything came back negative so they gave him some antibiotics for a few days just to be on the safe side. He's been good since then! He has his days and nights mixed up right now but that's not uncommon. He had to get another echo this past week, the doc said they continue to improve! yay! Also found out that the surgeons think Greyson can get a g-tube in the next couple of weeks! (how he'll get fed) We'll be able to get rid of those tubes on his face so that's exciting! The kidney doctors want him to gain a little more weight before he gets evaluated for a Kidney transplant but our doctor said that his kidney status is stable right now. So were hoping that is still a little ways down the road. So anyway that's whats going on right now! He's still doing good and hanging in there! Thanks for all your thoughts and prayers! Keep em coming! =) 

 He has found his thumb/ hands 

 Sitting up in his physical therapy chair

 Sleepy boy

Doesn't get much sweeter =)