Well, we got the date for the g-tube surgery. She will be admitted on Friday the 17th. We don't know what time it will be yet, we should know early this coming week. Pray that nothing happens which would make it be cancelled and pray everything goes well with it. She will be having this done endoscopically. The doctor felt that she would probably be ready to have the g-tube removed around 2. If it happens before than great but that's what we're aiming for. We also discussed when she will go from the peg tube (long catheter type tube) to a button (flush against the skin, button, much like ones used on beach balls. LOL). He said he likes to wait about 12 weeks. While I'm not thrilled about waiting that long I trust his judgement. We also discussed pumps. I let him know I wanted the Zevex enteralite infinity or just enteralit as they are both more portable than Kangaroo pumps. He said he's pulled some strings before and that I can talk with the case manager and hopefully we can get that. YAY. She will probably only be in the hospital for a little over 24 hours and then will come home. With my nursing experience I feel comfortable with this.
On a happy note, we went to "A day out with Thomas" today for the 2nd year in a row. It was quite cold by the time we got there and we had the last run with Thomas. Lily was cranky most of the time. Caden somehow managed to break part of the stroller :( and while riding Thomas Lily threw her shoe out the window of the train!!! So while the kids enjoyed themselves I was a wreck. Sorta. LOL. Caden had a blast and can't wait to go back next year. We ended up driving down a maze of roads and found the general area she threw it out at and Nick (father in law) jumped out and went searching. Luckily, we all got a good mental picture of the buildings around it considering we were at least 3-4 miles or more from where the Thomas event was held.
We're hoping for a lazy day tomorrow. Depending on how well Emma sleeps we may even make it to church. Here's hoping. Otherwise, it's cleaning, cleaning, relaxing, and more cleaning.
2 comments:
Good luck with surgery! Will she still be able to eat normally with the tube?
She'll be taking her bottles during the day and then tube fed through the night. Her tube will go directly into the stomach, not down her throat.
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