Sunday, December 30, 2012

Still here in DC

I want to take her home so bad.  Tachypnea is keeping her another night.  Its still intermittently in the 90s to 100+ (every few minutes)  and they are not ok with that.  The cardiologist changes tomorrow.  It will be up to him/her.  I just want to come home.  I want Cecilia home.  I feel really lonely.  I miss my kids.  I just want to go home and the girls show me what they got for xmas.  Nothings put away.  I have over a month worth of clean laundry to fold...my life is upside down and out of order and I want to get back to it.  I spent Thanksgiving, xmas eve and xmas in a hospital.  I dont complain a lot about what sucks with extended hospitalizations because at least Cecilia is still alive....:(  but I just cant help it. 

The Cardiologist decided to put her back on Spironolactone because the tachypnea and her Tricuspid Valve Regurgitation (which after viewing her echo, she thinks is definitely moderate and not "mild" like the  previous Cardio's interpretation).  If the med helps, Cecilia will finally be stable and can come home.





 

Thursday, December 27, 2012

I miss my girls

Cecilia has vomitted 0 times since switching hospitals.  Before they (UMMC) said we had no other options for her formula but they strongly disagreed here in DC.  I also thought she was maxed out on GI meds, but turns out there are still options for her.  I hope Cecilia will be home by New Years since Karl has to go back to work and I wont leave her to be alone.  I wish she was home weeks ago like most Glenn kids get discharged within an avg of 5-6 days...why couldn't it be like that for her.  I feel like she was cheated...and Im trying hard not to dwell on the what ifs...because I cant change the past and fix my regrets.  I just will stand my ground and fight for her quality of life, but  don't think I will need to ever again. 

 I just want to get back to being a family. I have a good feeling about our life, and feels like we are on the right path. 




Monday, December 24, 2012

Happy holidays

Tomorrow, on xmas, Cecilia will see her sisters for the first time since the evening of Dec 2, 2012.  Cecilias stoma is tender, and we have only had to pause her feeds once and get tylenol twice since admission on Thursday afternoon.  Her feeds are slowly increased.  They will change from 2-3 ml increase once a day, to twice a day.  Her GI doctor was really happy this morning.  Her new cardiologist is very friendly and funny.  I keep forgetting his name :(   BUT we will follow up with him in Annapolis after Cecilia finally goes home.  I love that there is an IV team here, and her blood labs have never gone smoother!  There is a Cardiologist here at all times.  If something is going on with Cecilia it notifies her nurse no matter where she is, as well as the Doctors.  They can look at her monitors from their own computer anytime they want to.  Everyone is so friendly and sympathetic.  They do puppets when they are cleaning her room, and all kinds of sweet gestures like that. 








Friday, December 21, 2012

Transfer

Its been a long time coming, and we finally transferred Hospitals for Cecilia.  Its in all of our best interest to start fresh.  I wont miss everybody, but we really are attached to people there.  It was hard to leave those we do love.  I hope we will keep in touch!
I can go into detail once home and settled.  For now, just getting pictures...and for whatever reason when I upload to the blog directly from my phone instead of my computer, the pics display sideways.  I cant do anything about that.  Its so lame.
Pics are not in order...some from ummc... of day 2 of bile, transfer to DC, CICU, HKU (step down).   Im going to make a video of the elevators!  ,they are the best!
Cecilias tiny little vanity toy, just for her, the little diva she is, from her heart sister, Cemaia <3


































Monday, December 17, 2012

Yucky

Cecilia feels yucky.  Up to 7 bile vomits in a short period, and it keeps coming despite them suctioning her stomach continuously.  Attaching pictures...I would feel miserable too if I was her
.....she is mostly inconsolable. The only times she seems like herself again is right after she pukes, but it doesn't last long.