This SUCKS!!!

I need to write but my head is so tired and swimming that I am jumping all over the place so please forgive this jumbled blog.

Sisters in the hospital bed

Hailey is in the hospital. She is ten.  She has a genetic disorder, a genetic deletion, 5 p minus, cri du chat, a break in the 5th chromosome...whatever way you want to say it.  But she has never been admitted to the hospital.

Everyone needs a salon day in the hospital

Having an auntie as a hair dresser is the best

This is the first time.

There have been outpatient procedures and doctor's visits.  There have been a handful of ER visits.

But never an admit.  Never have they kept her here and hooked her up to all of these machines and made her sleep in a hospital bed.

Did I mention that she doesn't do well out of her regular environment?  So on a good day, being here just sucks.

There is nothing really good I can say about it.

So she hadn't eaten since Sunday night and they thought it was just a sore throat and that she would get better...Keep trying to feed her, that's what they said.  But she seemed like she was drowning in her own food and I kept calling the doctors and telling them that but nope, they said wait it out...It will be fine.  By Wednesday I was in a panic and insisted on an appointment so they had her come in Thursday morning and suddenly she was admitted.

And Baby has to have a feeding tube too...

So that's it.  Here we are.  After a modified barium swallow test where she was aspirating every type of texture, they put in the ng tube.  Then came the fever, which miraculously went away with no explanation.  Then came the plugged tube and the vomiting this evening.

I hate this place.

I hate that they want to send us home in the next day or so but she hasn't even had a successful 4 hours string of time.

I hate that I had to beg them to see her and I hate how much I wanted to be wrong but I wasn't. 

I hate being right some times.

I hate that I keep crying and that I have been sneaking to the bathroom every few hours to sit on the floor and sob.

I hate cri du chat.  I hate swallowing problems.  I hate feeding difficulties.  I hate this disorder.  I hate this place.

Funny that people say hate is a strong word and you need to be careful using it.  Well I am being careful.  I hate all of this.

I will do it because I have no choice.  I don't get to say, "oh no thank you...I won't be handling this".  I don't get to say, "oh I can't deal with this".  I have to do it because I love her and she is counting on me to handle this.  She is counting on me to get her through this. 

So I have to limit my sobbing to the corner of the bathroom.  I have to feed her through a tube even though it scares the shit out of me. 

I have to be strong enough to handle the things that I hate because my love for her is stronger than anything else.