I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James

Friday, July 8, 2011

No words..

I have no words for how I feel. Well actually yes I do I just can't explain it. I don't know what to do anymore..Ever since extubation and after the nap he took, Kayden has been moving uncontrollably, he will not talk and he doesn't recognize anyone. He doesn't respond to his name, he doesn't know what is going on at ALL!!! He improved a little where he actually focused for a little bit on tv these evening and this morning he wasn't doing that. But by the time they gave him meds to help him rest, he was back to moving around and actually like 'trying' to sit up but he is so uncontrollable that we are afraid he's going to fall out of the bed. They have no idea what it is. He had a CT scan last night and nothing showed up on that. They got some blood & are planning to do an MRI in the morning so they will have to reintubate him. I just don't know what is going on. They said they've seen this behavior when someone has a stroke. But the CT didn't show signs of a stroke so maybe the MRI will tell more...I just don't know what it could be. But the stroke scenario sounds a little more realistic than anything else they have said...I have prayed and prayed & prayed when I can't do it anymore. And I'm waiting for God to answer those prayers and for Kayden to be okay and for Kayden to get his new heart. And when things get bad after praying for them to get better how can I not be frustrated? God doesn't give us more than we can handle? Why is he testing me so much right now? I don't know what to do I've handed this all over to him but I can't let go myself I can not. I will not let go because I'm his mother and I will do whatever I can even if it is analyzing him and trying to rack my brain for answers..like I have been doing all day even if my theories sound stupid i still ask. I know how Kayden is and  I know to always expect the unexpected with him which I have told doctors over and OVER again.. I just don't know when they will start listening to me. They have said since day 1 that Kayden is a very unique case and they haven't seen anyone like him & I'm starting to believe them more and more now.
Please just continue to pray for Kayden and pray this gets resolved soon & he gets re activated on the transplant list <3

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