Tuesday, December 9, 2008

Not REAL bad news...

I'm in a bit of a funk today. Although I know I should be calling different friends and family to tell them the news...no surgery Wednesday and no new date...I cannot bring myself to do it. A weight has fallen on me. Lillian is not well enough to proceed with the planned surgery. Problem therein---she needs the surgery like in ten days so we KNOW she will be well for about a week. Guess what? Surgery schedules don't work that way...grrrr. Now they say that it won't happen until after the holidays. Question is when will we be able to get her in while she's NOT sick? I feel frustrated...irritated might be a better word. Here's how it goes, she's sick all the time because she has the open palate and the trach. They won't try to take out the trach until they close the palate...they can't close the palate until she's NOT sick...have you followed the circle? As anxious as I felt about the impending surgery, I was ready to head down the road of all things to come....all the things we've been working towards. It's like someone has taken to sitting on my chest and won't get up. ***whine alert*** I don't want her to be sick anymore, I want to be mad at anyone or strike out at someone...I want someone to say...THIS is what will happen without fail...but they can't and I can't be mad at anyone, it's wasted energy. I don't even (at this moment) have the desire to go to school and face people with a fake happiness. Or have to act like I'm ok. I'm not, I'm not happy at this moment and I'm not ok. Just somedays you don't want to face "how are you?" My girl is suffering and I just want that to stop and I can't make it stop...is there a more helpless feeling? Bethany had asked me if I would cry if she didn't have the surgery and I said to her why would I do that? Guess who cried all the way home from Indy? I find it ironically funny. *SIGHS* Tomorrow I will rise and realize again what is not happening Wednesday, knowing it will happen, just not in my time...also another bit of irony...she finally got her RSV shot today...HA!

5 comments:

Vickie said...

Again, there is an RSV shot? I could have used that a couple of years ago.

What an ugly cycle.

You know, why can't we just show our "I am feeling crappy right now faces". Do we always have to fake happiness? Though , my Husband would say I am always showing my 'I am crappy" face:)

BTW, I have an award for you on my blog. When you have a chance, check it out.

Finding Normal said...

You so do not have to come in and fake happy. I have prep at 11:15 and lunch at 12. If you just want to come in my room, close the door and get it off your chest...do. I can even sneak you in the back way. You have my school email. Let me know. Or just say "not good" when people ask and walk away. We're a hearty bunch, we can handle it. And they're used to me doing it, and busting out in tears, so no one would be THAT shocked. LOL

I know you were ready to just get this over with and move on to the next hurdles of healing, trach removal, eating, talking. There is a lot riding on her new palate, and it thoroughly BITES that she is not well enough for it right now. And you are doing everything in your power to make her well, so it has to be frustrating that your best is still not enough. The only thing I can say is that it will happen, and it will happen in His time. And crying is okay, and being angry is okay, and wanting to yell at the doctors is okay. It's all okay, and it will eventually be okay.

Many hugs, my friend. I'm crying with you.

TRUST

Marissa said...

I'm sorry Lillian and you are going thru this. Such a bummer to not have the surgery.

Is she on Pulmicort nebulizer? Marissa's pulmo put her on 2x day for the winter. While it won't prevent her from getting sick, it does boost her lung function and increase the chances of illness staying out of her lungs. She got a cold right after Halloween and it stayed in her head... never went to her lungs. I think I can thank Pulmicort for that.

Also, Marissa's ped told to us to give her 250 mg of liquid vitamin c a day thru the winter to boost her immune system.

If Lillian is not already on these two things, you might want to check with her docs about what they think. Hopefully they would keep her well enough for the surgery.

(((Hugs)))

Alicia

Junior Mints said...

Sending hugs for you and Lillian...enjoy your girl today :)

Finding Normal said...

Came back to see if you were feeling better. Hope so. :/