Tuesday, March 23, 2010

Brayden's changes

I have not had much of a chance to sit down at my computer for several days. Most of my time has been on the phone.

First for scheduling. Brayden is officially scheduled to start the ketogenic diet. He will be admitted to Children's April 5th. He will be there for at least 4 days. He will be closely monitored not only to start this diet but also because of his unexplainable G-I history/problems. He will be doing this diet through his G-J tube, and I have yet to find parents that have done this diet via j-tube (so if you know anyone, pass them my way). We are working to get things set up for his life on the keto diet.

Secondly, Brayden's waiver. Boy, I have been on the phone way too much about this. In Virginia, Brayden is currently on something called the EDCD waiver. He got on this waiver before he even had a feeding tube and was only on a few medications. Since that time, Brayden's medical needs have escalated. He waiver is being re-evaluated, adjusted, whatever... What all of this means is that Brayden will no longer have an attendant, he will receive nursing care. After coming home from the hospital, Brayden will have two nurses that will be at our home to assist with his care.

The transition of things two things has been very time consuming. I have talked to many people at VA DMAS, local case worker, local department of health, the doctors, several nursing agencies, the hospital and more. I talked to all of them several times, collected lots of paper work and had a few meetings. All the while trying to navigate these changes with the least amount of problems.

To recap, Brayden starts the ketogenic diet and will be receiving full time nursing care at home.


Debbie said...

You have found a parent!

Hudson was on the keto diet last year and it was done through his g-tube. He was eating what the dietician called "snacks" at the time, which was a few oz. of baby food, applesause, yogurt. We would just infuse oil through hhis g-tube before giving anything orally.

I would be given a recipe at a certain ratio and make his formula. From what I hear, it is much easier to try this diet via g-tube vs. an oral diet.

Feel free to bounce any questions you may have my way...I am here to help! :)

Hope this is your answer for your boy...my prayers will be with you.


Debbie said...

whoops sorry...read your post too quick and saw "J"...no ...Hudson just has a plain old "G" ...wrong letter in the alphabet!!! My apologies.

I am here to help though if I can! :)

MrsFought said...

We are discussing putting Matthew on the Keto diet. Please let me know how you feel about it~~I am still navigating through this and would love an inside view!!! Good luck to you :)

The Henrys said...

Good luck with the new diet, and all of the preperations that you have to make.

kirstenpetree said...

Layne is on the Keto diet but has a G-tube not a J tube so I can't help in that area. But the diet has been successful for him and improved his development some. So I hope that this diet can help Brayden as well! Layne has been seizure free for over a year now, hopefully it is your answer too!

Junior said...

Junior was on the keto diet for about 7 years but that was prior to his J tube placement so it was all through the G tube. We didn't have to go through a hospital admit with Junior but he hadn't had any real GI issues.
Good luck, it was the miracle for my boy, he was able to come off all but one seizure med and just "woke up". His communication took off and though we had to wean off a couple years ago, I would do it all again in a heart beat.

Junior's buddy is on the keto diet through his J tube but his mom doesn't have a computer. Feel free to email me any questions though and I will ask her. hjoythom@yahoo.com

the deKorne family said...

That's a lot of changes! How many hours a day will they be with you? Praying for you.

the deKorne family said...

That's a lot of changes! How many hours a day will they be with you? Praying for you.

Shannon said...

Nice to have you back. :) I am so happy to read that all of your hard work has paid off and you are going to get nursing help. That is going to be great!