Saturday, January 4, 2014

New year, new hope

It's been nearly 7 weeks since Audrey's surgery. She's been in the hospital twice since her initial discharge on the 25th. We've been struggling with urine infections since early October. With her last admission we added Infectious Disease to her medical team to help us get a handle on her. While they initially thought they would be able to make routine recommendations, they quickly understood the complexity that is Audrey. Her main problem is her dysmotility. She has spent the last 2 years on first erythromycin then augmentin trying to make her intestines move. Thrown in there are times she's been on flagyl or neomycin for small intestinal bacteria overgrowth. Then in March when we started cathing her, we added keflex to the mix. We've spent the last 2 years wiping out all the normal good bacteria from her body so we are left with more serious bacteria which is why she gets ill so quickly. Audrey is unable to use probiotics since she has a central line and unfortunately she's just not tolerating enough feeds to get her GI tract to make normal bacteria. There are a couple ideas we will discuss with her GI and urologist this month to see if we can get a different plan. For now we are holding our breath hoping she does not get sick before then.

Energy wise, Audrey is doing amazing!! When she is out of the hospital and feeling good I feel like I have my little girl back. She is feeling so much better. Even though she's not tolerating much feeding wise, she is so much happier and feels so much better, her surgery was definitely a success!! It may seem drastic to some to put her through an ileostomy and still be completely TPN dependent, however, if you could have seen what she was going through everyday you would understand. She had severe abdominal distention as her baseline, she had an enema every single day just to pass gas, she couldn't tolerate a single medication through her j-tube without extreme pain. That was her life everyday. She was tired and in pain. Now she is happy. Her tummy doesn't hurt, her medication list is cut in half and her body finally has energy to play instead of using it all trying to make her intestines work. It truly has been life changing for her.

While we have a long way to go for her,  I am finally feeling hopeful. This journey is so hard. Everytime there is an improvement somewhere, either something else fails or the improvement is short lived. But I have hope for Audrey. We are living the motto "Carpe Diem" right now. We are taking full advantage of her good days and making them amazing days, knowing she will likely need a day or two to recover. We are rejoicing that she is even having good days since it has been months without them. We are hoping to spend less time in the hospital this year. Last year she spent 77 days in the hospital. Fingers crossed it is much lower this year!! Audrey has also been matched with a runner in the Irunformichael program so we are so excited to participate with that. Over all we are looking forward to this new year and all the new chances it will bring.

Best ostomy belt ever!

First time swinging in over a year!
She loves her princesses!

Best big brother ever!
She was deliriously happy (literally)

What keeps her going!