Day 3 good night

Goodnight from Macsen. Glad we moved to step down - 1 step closer to going home - but today was not easy. Macsen is in quite a bit of pain that comes and goes. If he gets his Tylenol even 4 hrs to the minute he is ok. But sometimes the nurses get busy and it is 5 hrs, or 6 then he is in so much pain he needs something immediate and they give him IV delaudid to help him get his pain under control again. Delaudid  is a very potent, morphine like med. I think it is making his nose and eyes itchy like the morphine did too so we may need to start Benadryl to help with that reaction. 

He has had more happy silly moments today - I miss my sweet boy so much. 

But he looks at me like he is so done with me - smiles for everyone else but me :( I feel like he has lost trust in me, like I did this to him or I betrayed him by allowing these people to hurt him over and over again.  It's heartbreaking. He is now terrified of anyone touching him - if anyone looks like they are going to try to move him or they touch his body he starts to panic- shaking and breathing in strangled half gasps, his face purple, tears leaking down the sides of his face. His eyes searching but not for mine anymore -  for someone else to save him. I know time will erase most of this for him but not for me. 

Macsen had 3 Ivs and lines removed today - so much tape encasing his hands and feet holding the Ivs in place  had to be pulled off first. Then he had to have a new IV placed which took 2 attempts. Then, his night nurse thought his new IV was leaking so they had to pull off all the tape again - M was barely breathing he was so worked up :( it was awful.

On the great side, he finally drank same of his milk! And he ate some noodles and Italian lemon ice. He's asking for water again. And now, after more delaudid, he is sleeping.

Tomorrow he needs to poop. And play. He needs to try to walk. And we'll look for some puppies to play with. Big day. Good night everyone and thank you for your continued prayers and support - knowing you are all lifting Macsen and our family up has helped us so much. My sisters have been amazing - driving to PA , feeding us,  staying with M so we can step away for a few minutes, Washing our clothes, making us laugh, and just being here. And the kids grandmother Nana has done a great job distracting the girls and keeping up with their routines. We know they are in good hands.