5 months, 1 week, 3 days since diagnosis
day #54 of current hospital stay
We were discharged today. We're finally settled into our tiny little suite at the Ronald McDonald house. I have a kitchen and I can make my own food. It's like a little home. A home without the rest of my family doesn't feel much like home, though.
Riker hasn't really improved. She's had a few moments where she smiled and played in the last two days but mostly she's cried. She's even having trouble putting herself to sleep lately. So, mostly she cries.
The doctors "humored me" again and did blood cultures on Riker. She had a temp consistently of just over 99 yesterday and that's high for her. The attending oncologist said she didn't want to send out cultures because there's a greater chance that the culture would be contaminated than to actually show if she had something going on. What a load of crap. Does that mean that all the cultures they draw are probably just contaminated?
Either way, there's nothing clinically wrong with Riker and they feel that maybe she's just sick of being in the hospital. (um... she doesn't know any different) Either way, there is nothing wrong with her that would make her need to stay at the hospital. We can work on whatever it is outpatient at the clinic.
I don't mean to be so discouraged right now. I should be elated that she's well enough to leave the hospital. So many kids aren't. Some never get to leave.
It's hard to keep telling myself that, though. It's lonely in this room with just my crying baby and me. I can't bring her anywhere.... so we're stuck in here, all alone. I miss my own house, Jon and Valentine. But now I don't even have a house to go to. I am so scared and frustrated and angry and sad.
I held it together almost all of the time at the hospital but at least when I lost it, someone was there for me or someone could be with Riker so I could go somewhere and have a break. Now it's just Riker and I... and I better hold it together because I'm all she's got.
Tory
ReplyDeleteI know it is tough and if she could talk right now that little miracle child would be saying mommy thank you so much for being there for me every step of the way, loving me and fighting for me to get better.Remember every day is one more day for that marrow to grow stronger in her body. There are many people out here sending you positive thoughts. What you have done for her is priceless.
Renelle