Day 19

Woke up this morning to my Parker all cuddled up next to me! I missed him so much! It's been 24 days since we left home! A very long time to be away from our boy! I cannot wait to go home and have all of my boys together! Those are the days I dream of! My other little boy had a good day. He had an episode this morning with some SVT's but the upped his amiodarone and it brought it back to normal sinus! He was down some weight amd he continues to produce a large output from his dialysis They set his vent settings down today too! It will still be a few days before they restart his sprinting exercises! His last few episodes really set him back on the breathing tube. A few days ago they were discussing removing it now it will take more time! They all say the same thing, once his fluid is way down he will excel on his ventilator! They did start to wean his sedation today too!! He is awake a lot more. He is wide eye and interested on what is going on around him! He does get himself so upset when they move him or suction him! It breaks my heart with some of his reactions. He makes painful faces or throws up and his face gets so red! There is nothing I can do to help him and I hate it! He was pretty alert today and he did it so fast that me and the nurse both jumped on him... But he had that breathing tube in his hands ready to pull and he is pretty strong with his grip do we both got freaked out. That was a bad thing!! I have said it before but the nurses love him! They think he is so adorable and they call him baby sugar! They love his name too! Which it is pretty sweet!!! :) I hate saying good night to him! It's one of the hardest things we have to do! Leaving him for the night breaks my heart and my thoughts are always consumed with him and how he is doing! I love being there next to him so when he is awake and upset I can comfort him! I can't do that when I am away. It makes me sad that a nurse has to do it!! They are amazing people and genuinely nice to him but it's not his momma or his daddy! You better bet that once we get home. I am not leaving him for a long time! Xoxo