Monday, June 29, 2009

Home Again

Gess was discharged today and is home.  He is on demoral, so is already driving me crazy.  I keep telling him he needs to sit down, but he keeps getting back up.  Seriously I am going to have to tie him down!  I have such a low tolerance for the "demoral activity" right now.  I hate, hate, hate, hate, hate it.  Ughhh...

I am also unsure about him being home.  They didn't do anything in the hospital, so there is no reason for me to believe that we aren't going to be there next week.  We have no answers and not much hope that we are going to get any.  

Today I was feeling especially overwhelmed and just wondered how much more of this we can take.  Gess seems to be weathering this better than me, which makes me feel weak (and I really don't like to feel that way).  

I am exhausted, utterly exhausted.  The very thought of CF makes me want to burst into tears right now.   But, I'm the only one here, so I can't break.  I have to keep it together somehow.  So, here's to hoping that I can and that Gess can spend more than a few days out of the hospital.


Elizabeth said...

Hey Lisa -- thinking of you guys. I'm so sorry about all the stress and lack of answers. For what it's worth, Will tells me that they eventually embolized all the bronchial arteries (which stopped the bleeding but resulted in some additional loss of lung function, Will thought around 2%). I have no idea if you all are anywhere close to that (Will says he was coughing up mason jars full of blood), but just in case it's helpfu. If you ever want a break and there's anything I can do, please let me know! You're welcome here any time.

Amy said...

Have you looked more into second opinions? It just seems so ridiculous that he is constantly coughing up blood and they can't do a dam thing for him.

I'm constantly thinking of you guys!


NoExcuses said...

I'm with Amy... getting a 2nd or even 3rd opinion sounds like it would be less effort than all the stuff you guys are going through :(

Take care

Katey said...

I'm glad Gess is home. But I'm sorry they didn't do anything for him or figure anything out while in the hospital!

I agree with Amy never hurts to get a 2nd opinion. I've done it before and was glad I did.

I'll be praying everything works out and that you will be able to handle the "demoral."

CowTown said...

How did it go with Gess' dad when he came out to help a few weeks ago? Can he or anyone else come to help you out again?

This is extremely frustrating! I'm sorry.