As Milo has gotten more and more miserable and evidence of safely extubating him is no where to be found, they have decided to re sedate him in an effort to keep him more comfortable and keep his vitals at good levels.
We had an interesting day yesterday as the sedatives wore off and Milo’s desire to move and communicate increased. Since he can’t actually speak or open his eyes more than a slit, communicating had to come a different way.
His mid day nurse decided to untie him and explain to him that if he pulled on cords we’d have to tie him down again. He has done marvelous in keeping his hands off of the things he needs to, but now he can use his hands more to talk to us. Well, one of his hands. The other one is so tapped up that he can’t really move it.
We spent most of yesterday afternoon, all night and all this morning “talking” to Milo, repositioning Milo and trying in all ways to calm him down. Last night about 11 they turned the machine off that was making him breath and programmed it to only give him forced air (like a c-pap machine). That was progress since now he is breathing on his own.
His tongue decreased in swelling about half, another good sign. But his vocal cords and air way in his throat refuse to de-swell. They are afraid if they take out the breathing tube, the swelling will then have space to close off his ability to breath altogether. Normally they would try it anyway, but since they can’t do an emergency resuscitation without cutting his halo, they have opted to wait till the swelling goes down. Good choice. Don’t want to redo the halo. NO THANK YOU!!
So here we wait. It’s ok. With every surgery he has had there has been a set back and this is the one for this surgery. It’s a little exhausting, but well worth the time and effort. I am glad I can be here when he reaches out his hand for me. Or when I can moisten his tongue with water when the nurse is busy. Or when we can just be together.
Another interesting thing happened last night. He was peacefully sleeping, I dozed and his nurse went on break. It was about 3:30am. All of a sudden I hear “help”. There is another nurse standing next to Milo’s bed holding him. He was headed head first off the bed and she barely caught him. His breathing hose became disconnected. She said that was a good thing because had it not, the breathing tube would have dislodged from his lungs and that would have been worse! They got him back in bed and securely repositioned so that would not happen again. I immediately went out of the ICU and gave my heartfelt thanks to the Lord that Milo did not fall off the bed, did not dislodge his breathing tube and that he didn’t suffocate while his breathing hose was disconnected. The Lord works miracles and I am so blessed to be a part of so many that occur in Milo’s life.
If my memory is correct, it was about this point in Milo’s first surgery that he had to be returned to the O.R. and have his eyes restitched closed because of swelling problems. He also had to have his hands restrained and covered with something called “no-nos” because he kept trying to grab things that shouldn’t be grabbed. You all managed to get through that, you will do the same with this. They boy is simply a fighter. Hang in there. Just curious..How are you going to keep him quiet when he goes home?
Hi Sami,
Hang in there, and thanks for your continued optimism. It is comforting and inspiring, to be able to read all the moment-by-moment updates on Milo’s condition, which can be scary, knowing that you are relying on the Lord to protect and heal. I am praying for all of you!
Dawn
I said an extra prayer for Milo Man tonight Sami & Scott. He is a fighter and so are you guys, you will all pull through this. We are all inspired by your strength and spirit.
Take care.
Roberta
Whisper in Milo’s ear for me: Grandma Ackerman is waiting for her super hero, Milo Man, to come help her to walk with her crutches five or maybe six steps, just for him!” Tell him Grandma & Auntie Sara, and 75 or more people from their Facebook Friends, some from other countries, have him in their prayers.
Stay tough Milo. We are praying for you and your mom and dad. May you heal quickly.