No idea when Spencer will be getting out of the hospital, but when he does it will be vital that we keep the germs away from our house and keep things very sanitary so that he can avoid the germs. If we go out - I'm afraid we'll be wearing masks to protect ourselves. It's not only important that Spencer doesn't get sick - but me as well. I don't want to bring germs into the house!!! I'm trying to get REALLY good at using hand sanitizer frequently and washing my hands when I can. Before Spence gets to go home I'm cleaning the house like the worse germ-a-phobe you've ever seen. lol I'm really looking forward to the day that I can take him home!!! We're so tired of this place. We'd LOVE to get out by Thanksgiving but I have a feeling that might not be possible.
So today I'm just relaxing in the hospital with my love. Going to try to keep him company and awake all day. Waiting for doctors to come in and several discussions to be had. Kind of nervous but we need things answered. We need to know. I caught his team as I was getting off the elevator and they said they'd be back in to examine him and talk with us about everything - but they said it looks like weening off the vent is going to be a very slow and long process. This is very discouraging for both Spencer and I. Here I look at Spencer, and he is looking great, healthy, smile on his face, shine in his eye.... but yet he needs help breathing and his muscle mass is basically zero right now. I'm sure it's even more frustrating to him because he knows what he wants to do, he can just imagine what it will be like to get off the vent - he wants it SO bad; but his body is not following along. Of course the process could go faster than any of us imagine (it's honestly HARD for me to imagine it taking a long time because I see Spencer looking so well) or it could even take longer than we imagine.
This is why physical therapy and gaining weight is so gosh darned important. One reason it's going to be a slow process is because he's lost SO much weight and his muscles have atrophied so much. I'm hoping that we can get his weight up quickly because they talk like everything else will follow. But PT is so important because it strengthens his lungs and allows them to get better air flow. I'm trying to set goals every single day with Spence. Sure we can try and have a lot of fun while we're here in the hospital - but a lot of it is going to need to be WORK as we try to get him in the best shape possible.
We can't start evaluation for transplant until he gets stronger. He will have to undergo a lot of procedures (EGD, heart caths, etc) and his body can't handle that right now. I don't know much about the transplant process and where we are with Spencer about it... but I hope to get some answers soon. We need to know.
It's so hard to see his body to frail but his spirits soaring high. So, so unimaginably hard. Sometimes I just want to be like - K Spence lets go home, because he's feeling so well and acting just like the old Spence. Once we get the pain under control I hope things will get even better. He's taking less pain medication, only about 2 doses a day and he waits longer and longer to take them. He doesn't take them until his pain gets to be about an 8 - which I think is PRETTY AMAZING!
So those are my daily thoughts..... If anyone has any tips on keeping Spencer motivated and working hard as well as keeping his spirits up - please let me know. I can see him getting tired and I am trying so very very hard to help keep him going!!!!!