Wednesday, July 15, 2009

Some of the "Robots" taking care of Ryan !


If you know Ryan then you know he has a LOVE I mean LOVE of robots and anything robotic like in any way! So I wanted to preserve some of his favorite things about this horrible circumstance we have found ourselves in and take some pictures of things that we will remember with a smile. He loves the portable x-ray machine, all the big machines that have given him life support, anything that will look like, sound like or move like a machine or robot. He is impressed with. I know he gets it honest ( from his daddy the engineer) so we just embrace it. When asked what if he would like anything from downstairs, we were referring to the cafeteria, he piped up and actually requested "the expensive" R2D2 robot toy you will not let me have. One he has been wanting but was too expensive for just a toy R2D2 robot toy. One that works with voice activation etc. We just chuckled and then went to Amazon.com and ordered it!! LOL. I think he deserved a BIG prize for going through this ordeal and being a real trooper.
Today they removed some of his lines and allowed him to get up and move around enough to shuffle a bit to pee and get a Popsicle. That activity wore him out enough that after two outings he went to sleep. They will remove his chest tube tomorrow and hopefully he will be well enough to move to the step down unit. After a few stable days in the step down unit he will be ready to come home. He will have 6-8 weeks of healing and limited activity and repeated trips back down here for checkups and evaluations but at least we can come home. We are not allowed to lift him up by his underarms in anyway. They do not want anything pressing anywhere that would shift the sternum welding wires. It is amazing what they can do here and with such speed accuracy and excellence. It is a truly amazing place and they have been wonderful to our family and Ryan most importantly!!
We did meet another family whose infant son was born with the same coarctation Ryan was born with 6 years ago we were able to offer a little support because we have been there and done that.
He is doing the best he could possibly do. He has responded well to EVERYTHING they have done to him and his heart. He is being weaned down off the narcotic pain medication and being put on just a mild IV one for now. He has done great and is not experiencing too much pain with anything. Which helps me relax. He smiles that Mommy and Ryan have sleep overs and seems to be content that I am staying with him through the night.
Thanks for the prayers we have received the best of everything in all we have been through and the prayers and blessings have been wonderful. I am grateful to have all you well wishers in my life and thankful to be surrounded by such love from family and friends.