Its Just Lonely

Ash and I sit here in Nebraska so far from home. Its all too familiar to us. The days are soooo long and we are just plain lonely. It hurts so much to be away from home, from Dave, from the kids. We want nothing more than to be back in Texas doing that "nothing special" thing that makes it all so special.

They can find nothing wrong with Ashley Kate except for a slow healing bowel. How grateful my heart is to know that she has no infection, no rejection, no virus, but yet how frustrating it is to be here knowing we should be at home. This bowel of hers has given us so very much and yet it has also taken so very much. What an odd combination it is. Without it she would not have life, yet because of it she misses out on so much of life. Irony.

I ask what the plan is for us and they don't seem to have one. Today I was told we are working on her immunosuppression. That seems to be it. I asked if we could make those adjustments by phone and they answered, "but we would have to wait a day to get lab values." So its that 24 hour overnight turn around that has us here this week. Her biopsy showed an ulcerated, slow healing bowel. Her Rapamune(2nd immunosuppression drug) is the culprit. So are we going to stop it? No. We are going to continue using it to suppress her immune system and so we are going to have to accept that this healing process is going to take a long time. It seems as though we are trapped.

In the grand scheme of things this lonliness means nothing and yet it means everything. Its just one of those days when my heart hurts because of wanting so desperately to live her life at home and not in this hospital.

Perhaps next week if we can get her feeding up to 30cc an hour they may consider letting us go back home(on TPN) and work on all of this. You know how that goes. It depends on what surgeon and what attitude they walk in with on any given day. All I know is that a day of sitting here in Omaha making no changes in her care plan and doing nothing to treat her is a day we have lost from home making memories and treating each moment with her there as if it were the most important.

Some days I think it would be easier if I didn't love Dave and the kids so much. Maybe if I didn't like them then I wouldn't want to be with them and then it wouldn't feel so lonely? Too bad they happen to be the coolest people I know and all I want to do is hang out with them. What a crazy life! Trish