Friday, January 23, 2009

Long Long week

I have to apologize to anyone who follows Abby's blog that it has taken me so long to update. Abby has been in the hospital and her father did not want me to post anything until his parents in Europe knew of the situation.
Like alot of girls with Rett Syndrome we had been unable to maintain a healthy weight for her. Her Doctor had suggested a gtube for her months ago and I had begged off with a promise that I could get her to eat more and gain weight. For months I tried and the more I tried the more she fought me until she just stopped eating almost altogether. Then she stopped drinking.
We could have one day where she would drink 3-4 bottles of formula and the for the next few days she would drink less than one.
She was the same with food. First she stopped eating breakfast all together and I was sending her to school empty. Soon the weight started to drop off until I took her to the doc because I was at my wits end and very worried. That was last Friday the 16th.
The first night they blew several veins trying to get a iv in. The same night several attempt were made at getting a feeding tube down through her nasal cavity into her stomach. After much frustration and bloody noses they started to feed her through IV. They feed herblood was taken a for 4 days through an IV while tests were performed.
Wednesday she has surgery for a fundo of the top of her stomach for her reflux. They also added a gtube at that time or visa versa. Her surgery was terribly scary and frustrating. The surgery itself was ok but afterwards her throat had swelled and she is a mouth breather so her oxygen level was in the mid seventies. Her 45 minutes in recovery turned in to over three hours without us knowing what was going on except that her stats were low.
Today is Friday so we have been here for a week. We are sore and tired but the staff her is incredible and they are taking very good care of her. I am receiving training on how to care for her feding and medicating needs while she recoops.
I want to thank all of you with all my heart that have sent flowers and videos and chocolates and packages. It means the world to me at this time. I will keep you updated the best I can while we are here.
This was the day after surgery with her new bear that Alexa and family sent
This was music therapy with Miss Laura. Abby really enjoyed the guitar
This is Lil Miss this morning. Snuggling and watching the wiggles.


SeairaLaNae said...


Thanks for posting the pictures, it is so good to see her beautiful face!
I love you guys!

jennifer mcdaniel said...

She is so cute I hate to see her so sick if u guys need anything just write. I would love to bring a special toy to her and a balloon. Tell Abby that madison loves her and misses her in school and to get well soon

Karlie Grace said...

I'm so glad this is behind you and sweet girl is on the road to recovery. She looks precious snuggled up to her bear and i just love the way she and Mrs. Laura are looking at each other! Get some rest Momma, i know you must be exhausted.

Avery said...

she is looking pretty good! Hopefully her fast recovery will continue! XOXO!

Brooklyn and Kelly said...

I am so happy to read this update and see pictures of her sweet little face, I have been so worried about her - and you - this kind of stuff is rough on mommies too - hopefully it will not be long until you are home and comfortable!