Hi all-I am in the hospital and the wi fi is spotty here-so I figured I would update while I can!
I updated on FB, but here is a bit more of what is going on. My hematocrit levels have been holding steady enough that I don't need blood transfusions, which is good, but they have been right on the verge. Seems like they are staying level now though, so hopefully that is a good sign.
I had my first infusion of Remicade on Friday night, and it helped, but it is slow going here. I can now pass gas, which is a good improvement, and my BMs have decreased, which is good (5 yesterday, 3 today), but I am still losing blood with everyone, and my GI won't let me go until there are 2 semi-formed non bloody (sorry for the TMI), so I am not there yet. We will re-evaluate tomorrow and go from there. He is talking about potentially doing another flex sig, which I am dreading because the last one I had last week was what set me over the edge in the first place. But that may come to pass.
He also said if things don't improve fast enough, we will move on to another treatment, but it would mean another week in the hospital, so I hope it doesn't come to that. Apparently, it requires a lot of monitoring and it somewhat of a big thing, so please pray we don't get to that point.
I know he is making the right call, but it is hard. I just want to go home! Bill brought the girls in this evening, which was nice (but made me so nervous having them here-ugh, the germs!!!). I MISS them so so much. And he is trying, but he is very stressed. That is hard for me because when I talk to him, he isn't trying to hide how overwhelmed he is and how much he feels like all of this is stressing him. I feel like, I am stuck here with all this time on my hands to think about what I am NOT doing, and i just want him to be upbeat and fake it, for goodness sake! Anyway, I know he will manage. Thankfully, we were all supposed to be on vaca this week (my mom and dad and bro and his family are all there, so Bill doesn't have my parents for help), so he had taken off this entire week. So no worries about work at least.
Ok, there is my update for now. I am trying to stay positive, and it isn't always easy, but I know I am getting the best care for myself right now and am just trying to be ok about that.
I'll try and update when I can, but it is hard with this spotty internet. Thank you all so much for continuing to keep me in your thoughts and prayers.
Laura, I was hoping to read that you were home. I can't even imagine how hard it has been on you. I am sorry things have been slow to improve, but at least it sounds like you are going in the right direction.
I want to give Bill a swift kick in the butt for the smallest complaint that may come out of his mouth. You are right, he should totally be faking it, regardless of how hard it has been without you. But right now, you need to worry only about getting yourself better. Bill and the girls will be fine!
Keep us posted, if you can, and know that we are all thinking of you.
Laura you are on my mind so much these days. I was hoping you were home and resting too but like you said, the doctors are making the choice by keeping you.
I will continue to say prayers for a quick recovery and that this new medicine will be the answer you are looking for.
I'm sorry to read that you're still in the hospital, but it's good to know you're receiving the care you need. Praying for a quick recovery and return home. ((hugs))
Thanks for the update...I've been thinking about you everyday. I'm glad that you do have a Dr who is on top of this and making sure that you are ok before you leave. Sounds like you are getting better.
Sorry about DH. Men just aren't able to deal with the pitfalls of life as well as we are.
I hope that you are able to get out soon. Please let us know how you are doing.
shame on bill for acting that way! i'm sure he is overwhelmed, but they are HIS daughters. he should be able to take care of them for a week without making you feel bad. this is not your fault and bill needs to deal with it without making you more stressed!!!
i really hope you improve and are out of there soon. however, i hope you are going to still be able to get the rest you need at home! get well, supa *hugs*
