Wednesday, May 20, 2009

Prepping for next week

This week we have been spending a lot of time getting Ellie and ourselves ready for next week's events.  The reality of what is going to happen is still quite abstract to all of us since Ellie's ostomy has been with us since she came home in 2006 (yes, ostomy bags have been part of our family since November, 2006!).  It has been a long time since Ellie has had surgery of any kind.  

The loss of the ostomy really hit home yesterday afternoon.  Somehow Abby and I got into a long conversation about our inventory of ostomy supplies.  I counted six sets.  Not a lot but I figured it would get us through.

"Six sets, eight days.  We should be all set."

Abby looked at me and said, "Okay, but we need to let Children's know that we need to bring some home with us afterward."

 I looked at her and waited.  I figured that it would dawn on her. 

After a long pause, I said, "Abby, we're not coming home with an ostomy."

"Oh wow.  I just hadn't thought about that."

The other side of the reality of going in next week came on today as we had Ellie's regular clinic appointment with the Children's Short Bowel Team.  The thought of being 'in' again with a post-op Ellie is tough to think about.  

But we did 8 months so a week or two shouldn't be all that hard.  Right?

The particulars from clinic:
  • Ellie weighed in at just what she did in February.  ~14 kilos ( about 31 pounds) which puts her in the 50th percentile for 37 month old girls.  Not a big gain but,
  • She grew about an inch and half since February.  which put her skinny self in the 75th percentile.  three quarters of 37 month old girls are shorter than Ellie.  Yahoo!
  • We asked to go back on TPN for the  period around her surgery to give her a bit of a pre-and post-op cushion for the time that she doesn't eat around surgery.  She starts omegaven and TPN tomorrow for the coming week.  No big deal but she will get 50% more calories than standard D10 and we also get the benefits of all of those omega threes for her surgery.
  • She is also starting her third course of cipro tomorrow for the pre-op period.  Having bad gut bugs is especially bad when you are operating on the bowel itself.  
  • Abby won the badass parent award for her line repair skills.  'You did what?,' said one doctor. 'Wow.'
  • And we got to meet a kid from Connecticut who had Ellie's original surgeon at Yale-New Haven, Dr. McKee.  The kid was at YNH and was referred to Children's for omegaven by Dr. McKee and the mom knew all about Ellie.  It is good to know that good doctors are aren't being vain and are doing the best thing for their kids and getting them omegaven.  If only all  doctors could do that.
We have a pre-op appointment next week for the administrative particulars but at this point next week we should be in the depths of an unpleasant night of home bowel prep (think roto-rooter and massive colonics) and then we are off to the big house.

I think we can.  I think we can.....



Sharron April said...

You sound so calm and collected here. I think of Tyler's next surgery and I almost get sick to my stomach. We are thinking speedy recovery thought. Go Ellie!

Kate said...

Yay for coming home without an ostomy! You all can do a week in the big house with one hand tied behind your backs. (do i sound sufficiently chipper and not-about-to-barf?) Go Team!

K8 from CT said...

I KNOW you can; I KNOW you can. Great news, guys. Keep it up!

Greg said...

I'm with K8 from CT. I KNOW YOU CAN!

Rock on Kido!

Becky said...

I'm definitely thinkin' about you guys!! I'll be checkin' in to see how things go!! How exciting!!!

The MVPs said...

We in Beaufort are with the majority... know you can.

Tamara G. said...

Good luck Ellie. your friends at Criterion will be thinking of you on the 29th.

Anonymous said...

Getting ready to do the no more stoma dance 4u! Evan has his surgery this coming Mon to reconnect, hopefully no more bags 4 us too! When is the surgery??