Not much has changed in the last few days. He is looking better and getting up a little more but no change in his lungs. We have an official diagnosis now of pneumonia. His lungs are just taking a bit longer to heal. We discovered today that talking on the phone is a good way to build his lungs back up since he's so social -- so if you have our number, feel free to call and ask for Kasey!
He had 2 drainage tubes coming out of his lower back, which they took out on Tuesday. He is still having to sleep with the bi-pap mask on. That is the apnea type mask that blows air into his lungs to create positive pressure. And it is that mask alone that is keeping us in ICU. As soon as he no longer needs to wear that mask when sleeping, we can transfer to the regular floor.
His left arm isn't working the way it did before surgery so we are now addressing that. The doc thinks it may be an issue of laying on the surgical table for 16 hours and how his arm was positioned. It possibly has some damage around his brachial plexus **I think that's what he called it** but he should regain the movement with physical therapy. They are saying that if it were a central nervous system or a spinal cord issue more of the body would be affected. His hands, fingers, and grip are normal. I just discovered a therapy tool tonight though. It takes two hands to use his iPod so I am making him switch hands every so often and he has no idea he's "working"!
Yesterday was moving day for the entire pediatric ICU so we are now in a new area of the hospital. It is less private in the new area so I am praying we can leave this unit soon. It is so humbling and so hard to watch families that know they will not take their babies home from this ICU. They are preparing to say goodbye. It was overwhelming to me yesterday to hear one family's story and to realize that only by the grace of God have we not had to say goodbye to Kasey with all that he's been through in his short life. Why do some babies make it and not others? It's hard. It's hard to celebrate our victories when someone else is losing. My heart is grateful, thankful, extremely humbled, and once again reminded that life is short -- and uncertain. Kasey's surgery was a grisly one and after the fact we've had a few docs admit the uncertainty he faced, not only with the surgery and recovery but with the scary lung issue the other day. They are professionals so at the moment when I am searching their faces for any sign of emotion I can't see it, but when it's all said and done and we are on the good side of things they have offered that emotion up.
So, yesterday was another emotional roller coaster type of day. And Kasey has what one nurse called "ICU Psychosis" so he sleeps off and on all day then at about 10pm he's ready to chat and comes to life. That makes it is hard to get any amount of sleep! I finally decided if I was going to make it in this ultra marathon I needed to get a good night's sleep, so I went home last night while my brother stayed with Kasey. I cried halfway home with the guilt of leaving. Noah was with me though so he tried to knock some sense into his Momma! It hits me at weird times, but like I said, you can't help but feel so incredibly blessed for your own trials when you see the path others are having to walk.
We still covet prayers for Kasey and all the other families in here with sick babies. It's so easy to get caught up in our lives and forget or block out the pain and suffering of others but being back in the hospital has been a quick reminder that all suffering is relative.
Thanks for all your support!
No comments:
Post a Comment