Monday, August 20, 2012

GI Surgery

On September 25th, Oaklynn is having surgery to get a feeding tube. It is very common for Rett girls to have feeding tubes because of their digestive problems. A lot of them are underweight so they get feeding tubes to get adequate nutrition. Oaklynn is not under weight. In fact, the GI kept saying how well nourished she looked. She even said, "You guys must spend a lot of your time making sure she is well fed." And she is correct!!

Which leads me to my next point. Feeding a child with Rett syndrome takes a LOT of time. They have a hard time chewing (sometimes she doesn't chew, she just swallows. So we have to be careful of the kind of food we give her) and the body has a hard time digesting it. Oaklynn takes at least an hour to eat each meal and then at least 30 minutes for each bottle. Then on top of that, the time it takes me to prepare and clean up each meal. Total, I probably spend about 5 hours a day on meals for Oaklynn. That is a LOT of time if you think about it. Once we get a feeding tube, I am hoping to be able to feed her one meal a day through the tube to cut down on the time I spend feeding her (she will still be able to eat from her mouth with the tube in).
Oaklynn also has a hard time drinking. She will drink about a 6oz bottle of breast milk every morning and night, so that is 12oz of fluid she is getting a day. She has a hard time drinking throughout the day. We try and she just spits it out. She constantly has purple bags under her eyes and is constipated from dehydration. In the Arizona summer, I worry about her not having enough fluid. I worry that I am going to turn around in the car and see her passed out. Having the tube will give us the ability to give her the right amount of fluids she needs (this was the reason we went to talk to the GI about a tube in the first place).

Oaklynn's surgery is Tuesday, September 25th. We check in to the hospital at 6am for a surgery time of 8am. It is a fairly quick surgery. The GI doctor intubates her. She sticks a long camera down her throat and into her tummy. The camera has a light on the end of it. She searches around her stomach for the perfect place to make the incision and shines the light against her skin from the inside of her stomach so you can see it on the outside. Once the surgeon sees the light, she makes an incision there and puts the "button" in place. Her button will look something like this...
The half circle part will go inside her stomach and the other part will be on the outside. It will be small and you wont notice it unless you actually see it. Here is a picture of someone actually wearing one...
It's one way so when it's open, nothing can come out, you can only put things in it. Once the surgery is done, she said we may stay at the hospital overnight. They like to put things through the tube and watch her to make sure she is doing OK with it.

She will be able to do all her normal activities once it has healed. The bard button will need to be changed every few months. The GI said for the first time we go see her and she can do it for us and then after that, we can do it ourselves. We may end up getting a "mickey button" within the year, she just wanted to start with a bard button for Oaklynn and go from there.

We feel good about this decision. It was one we were afraid of when we first learned about Rett syndrome and that this was a possibility but now we are excited to be able to get her the right fluid and nutrition that she needs (also to be able to give her the medications we need to without a fight from her... yay!!). Of course we are worried about the actual surgery part. She said it's a serious surgery but the good part is that it is fairly quick.

5 comments:

Colleen said...

Good for you for having the courage to do this for oaklynn before its a crisis. We moved from arizona to the California coast just a few months before our daughter was diagnosed with rett. It was impossible to keep her hydrated. I hope that the surgery goes smoothly and that quality of life improves quickly for you all.

Stephanie Moore said...

We will definitely be praying for her but I see the blessing in this. I know how hard it is to get her to take in liquids so this will be a great way to do so. We love her!!!

DibWoman said...

When Beth was born, the Bishop, as he gave her a blessing, said that we are thankful "...for the miracles of modern medicine...". I was thankful then for us and now I
am thankful for Oaklyn and your family. Loves, BJ

Derek & Kelli said...

Hi! You don't know me... but your blog titltle caught my eye. My best friend's daughter has Rett's. She lives out of state from me... so when we visit, my young children ask why she doesn't talk. I tell them God gave her to us to teach us and since she's so quiet we must listen carefully. Silent Angels :) She will be 12 in October. She had to have a heart surgery this summer and while in Childrens, they decided she couldn't wait any longer for her feeding tube. Kate has gained 6lbs! These medical opportunities are amazing! I am amazed at the people I now find who have children with Rett's... it was so unheard of when Kate was diagnosed. I pray for Oaklyn's successful surgery and a blessing for your family as they take this journey of loving and caring for Oaklyn.

Tanis said...

Whitney, you are definitely one of my Rett Momma heroes!! You and Oaklynn are always in my thoughts! I can't wait to meet you in feb and give you the biggest hug!!!!