Wednesday, May 13, 2009

Date with the Surgeon

...not to be confused with "surgery date."

Bridgette is old enough and strong enough to play with her ileostomy bag, and yes, even rip it off. Yesterday she grabbed it and yanked hard (through her onesie, by the way) and the wafer came off clean. Of course, nothing else was clean at that point.

For those moms out there, laughing in sweet rememberence of your stories with little ones and poop, rest assured it is not the same kind of evil moment if you have to change an ileostomy dressing on a 10-month old. It is considerably more evil. Those of you HD moms reading this blog know that. And I bet you're not laughing.

I wasn't laughing either. It was quite a challenge bathing, cleaning, and redressing the wound... and everything else by the time we were done. Bridgette seemed determined to prevent me from successfully adhering a new wafer to her skin, and she kept scratching her stomach around her stoma until it bled. After a two hour process fixing that one little yank, I put Bridgette down for a nap and, in a moment of weakness and frustration, called her surgeon.

Bri will visit Dr. Black a week from today for a consultation. If we're lucky, he will allow us to schedule a surgery date for sometime this summer. She's not quite the 20 lbs he requested before we return for advisement, but her constant fiddling with her medical attachment is making what has always been difficult, suddenly much more difficult.

As to everything else in our lives... it's been and will continue to be a busy week.

Friday: Jeff and I went on the longest date away from babs yet (except for our semi-stressful overnighter last December). We went to see Thoroughly Modern Millie at the SCERA. The show was not stellar, but it was fun.

Bridgette spent the evening with Uncle Paul and Aunt Brenda and cousin Aeris. Aeris gave her sweet puppy kisses.


Saturday: Bridgette and Jeff gave me a mother's day gift of three hours at the spa. It was wonderful! I was fully pampered with a massage, facial, and pedicure.

Sunday: I don't really want to talk about the first half of Sunday. It wasn't the greatest. We spent the second half of Sunday at Aunt Sarah's house with the rest of the Johnson family. We had a nice dinner and a relaxing afternoon together.

Monday: I spent all day doing schoolwork and then we went to Aunt Heidi & Uncle Jeremy's to celebrate cousin Ellie's second birthday. Here's Bridgette cuddled up with Aunt Sarah.

Ellie turned shy about blowing her candles out in front of everyone. It was pretty cute.

Here are the twins holding their munchkins. Ellie was giving Bridgette a kiss. Bridgette was very tired. She stayed up late a lot this week.

Tuesday: More schoolwork all day. In the evening we went back to Aunt Sarah's house to watch the finale of The Biggest Loser with some of Jeff's siblings.

Wednesday: More schoolwork all day. I'm taking a break to write this blog, then it will be back to the schoolwork. Of course, when I say "schoolwork all day" what I mean is, "schoolwork all day punctuated with feeding, entertaining, changing, and otherwise raising a child."

Extra: Bridgette "dances" to almost all music now. I gave her a musical card that I received on my last birthday from Paul & Brenda. When you open it, it plays the Star Wars overture. She kept opening the card and swaying to the music.

video

p.s. - Happy birthday Gramma Hoose!

8 comments:

Kristen said...

I love the clip of her dancing to the music, that is so cute! We hope everything goes smoothly with the surgery appointment, keep us updated.

kelgrandy said...

Wow, I'm sorry that things have been so crazy busy. I hope life slows down for you soon. And Brigette? Oh, that must have been so frustrating and difficult. Hopefully the surgeon can help? Keep us updated.

Anonymous said...

Thank you for the birthday wishes. It has been a good day.

I, too, wish you well with the visit with the surgeon. I hope he will give you a better idea of what the future will hold. Getting a surgery date would at least give you something to be working towards, seeing a light at the end of the tunnel, so to speak.

I love all of you lots.
Mom

Tammy and Alvin said...

Okay, I know I don't have experience with ileostomy (sp?) bags, but as I read your description ACE bandage popped into my mind. It probably wouldn't work, but in theory I was thinking if you wrapped an ace bandage around her bag and body, she wouldn't be able to get a grip on the edge and rip it off. The down side to this being she might think it's uncomfortable and hate it and cry all day or she may not be able to bend her body and would have to lay down all day, thus crying all day. Anyway, just a thought. It may not be a good one, but that's how brainstorming works. You think of something better!:)

Chelsea said...

I know our situations aren't particularly comparable, but Sophie ripped out her own Gavage tube enough times that the nurses finally taped cotton balls in her hands, making little baby boxing gloves. (You can do things like this with newborns.)

All I have to say is once a strong woman, always a strong woman. So this will resolve, but Babs will continue to do things her way. Sigh.

123 checkoutourfamily said...

Your Bri is just the cutest! I know I'm commenting backwards here but I love the video. How funny! Brayden never was much of a dancer to music, I'm curious to see if Brielle will be.

Sorry to hear about the tampering. I hope she gets to have surgery soon. We have to wait till June for a consulation for our Bri and then who knows when for surgery.

Brooke said...

Ugh on the bag clean-up. You're right, I'm not laughing. Hopefully you'll get to put the whole "bag experience" behind you soon.

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