Dear Lillian

Dear Sweet Girl,

I'm sitting at home with your sisters while Daddy has a visit with you at the hospital. I thought being home would bring me more rest, but alas it did not, but that's ok. I hope if you someday understand my words and wonder why I always say I'm tired you'll never feel bad. I wouldn't trade any moment of this journey with you for any amount of sleep in the world. Your precious life has brought me to places in my life that I never imagined. Joy, thanksgiving, trust, and faith. Though the valley's of your life will be memorable, the mountains will always be the best. One little squeeze from your tiny arms makes every moment of my weariness disappear. Nothing could ever make me tired of being with you or caring for you. I love you so much which reminds me of how much our Father must love us. You are a constant reminder to me of His promises, His life, and His love. I love you so much. Mommy

I wish I could say

It's been a better night/day...but it hasn't

That Lillian slept all night but she was awake ALL night

That she is not sitting in her bed crying bc I left the room bc I'm hungry, tired, and just need to be free of the room

That her vomiting has stopped, but it hasn't

That McDonalds was the best food in the world.

That I was strong and should just be positive instead of so broken down

What I can say? Her cough is some better.

I'm going home for the night while Matt takes over here one night.

Hacking Cough part 2

So, last night was atrocious. Lillian did not get any rest nor did I and I also found out that she was NOT getting every four hour treatments. HELLOOOO? In what land are we in? So, someone changed the order, didn't tell me and now she is in misery. Yesterday was rocky waters and it continued into the night and has flowed into today. For a brief moment this morning, I thought my next post might have come from the local jail....I guess they would arrest me had I smacked that doctor silly this morning. When I was expressing my concern about the treatment her response was "that's no big deal" Perhaps not the right word-age for the very concerned very sleep deprived Mother. Remember that cartoon about the weed and the flower? That's all I'm saying. So, no sleep for me, no rest for her, my throat is sore and oh yeah, she's back to almost a 102 temp. Her treatments have now been changed to every three hours at my insistance and it would be nice if she could keep her food down, but who could when you are hacking out a lung?

Not a good day

Lillian has had a rough day filled with coughing/puking episodes. She took a bit of a nose dive today and is now requiring oxygen. Xray was fine. They drew blood today to check her antibodies to explore possible immunity issues. It has been a crap day, I have a headache.

UGH UGH UGH

You can imagine from that title I don't have good news to share. Lillian's blood cultures are positive for a strep pnuemo infection which will require 10 days of IV antibiotics. Hopefully they will count the previous three days and she will only have 7 left unless the infection does not respond the the meds. GAHHHH

Holding the Course

Lillian continues to run fevers and they are re-doing blood cultures today. She's been up around the room off and on, but is pretty weak. Her cough is nasty and she was coughing up some blood this morning out of the trach.

Have I mentioned that I'm weary of this cycle?

I miss you bed spring.

Blood cultures

Lillian's blood cultures are positive so they are starting some Vanc today. They will probably redraw in a day or so. She is still running fevers and very unhappy. She is probably having a melt down as we speak. She cannot stand for me to leave her. Yes, we are staying at Hotel Riley again for those a-wondering. She has still been unable to tolerate a normal feeding.