Tuesday, March 24, 2009

Rough Times

Out poor Quinny has had a rough time recently. We went in for her sleep study last night at 8:00pm. She was hooked up to about 20 different leads on her tummy, back, legs, armpip, and face by around 8:30. They even had about 6 or 8 on her scalp. Then we watched some Thomas the Train, read about a zillion books and tried to get her to go to sleep. By 10:30 she still wasn't sleeping. She was pulling at all of the wires and crying. Man, she was not only mad but scared and oh-so-angry at us. I told her that we were going to spend the night at the doctors and she was excited. Then I told her that the doctors were going to put buttons on her tummy and hair- like Frosty- and she was excited. However, when she got them; not so much. Finally around midnight she fell asleep for about a half of an hour and one of the techs told me that she only needed 2 more leads put on. They tried to get the last two on her and she woke up... screaming and ripped at her leads and pulled by the handfuls. Man, how do they expect 2 year old to stay asleep with their entire face/head/body covered in leads and tape and concrete-like glue?? Around 1:30 am one of the techs said that if she wasn't able to get to sleep soon (and if they couldn't put all of the leads on her-) then we would have to reschedule. At this point, I knew that Quinn wasn't going to go back to sleep. She was angry, growling even. She has busted blood vessels all over her face now from crying and yelling for so long- pure torture. So we just left.

Today Quinn spent over an hour in the tub while I tried to take off the lead contacts from her tummy, back, and legs AND tried to get the concrete/glue and gauze out of her hair and off of her face. (on a side note, she called the concrete/glue stuff bananas because before it hardened it felt like a smooched banana) :)

We are NOT going to be getting this done again. We are going without. Either her doctors think that she needs the surgery or not. End of Story.


Quinn's Urologist thinks that she is having bladder spasms. We have a few options.

1. put her on a muscle relaxer

2. give her suppositories and MiraLax

So- we chose #2. She will be on Pedia-Lax for 3 days and then MiraLAX for a few months. Hopefully, by "cleaning her out", it will reduce any pressure on her bladder.

I am just tired of seeing her hurt all of the time.


Jon and Amanda plus 2 said...

Total nightmare...that's all I can say about the sleep study. Ridiculous to do all that to a 2 yr old...poor Quinn!

Hoping she caught up on her sleep...and that all these issues clear up for her SOON! - poor baby!

Christy said...

This makes me so sad.. poor girl. Gosh, I couldn't even fall asleep with all of that mess on me! I hope the Pedia-lax and Miralax help her! Love you all.

Lisa said...

Aw, this makes my heart so sad. I love you all so much and am sorry you have to keep going through crap. You, all three, are much braver than I think I would be. You are always in our prayers. Love you.

emlizalmo said...

I'm tired from reading this Michele. I can hardly imagine anything worse than watching your sweet baby girl have to endure that. You are such a great mom. You and the doctors will get it all sorted out. LOVE you guys.

mj said...

Oh,Michele,this is soooo sad. Poor,sweet little Quinn,and poor sweet Michele. I wish I could do something for both of you. I love you all so much and can not help but cry when I read this. I wish so much that it would stop !We will have a great time on Easter tho.

Lady said...

Oh Poor Baby! I hope the new medicine works and really - how do they expect a two year old to stay asleep with all the stuff on them?? Unless she was sedated - which would probably be pointless. Here's hoping her bladder is better soon.!