Monday, April 6, 2009

The Update

We talked with the surgeon around 6:15, then went to see Blaise and then had dinner, so apologies to those of you who have been waiting for an update. Here it is:

First, Blaise did beautifully.  The surgeon said that she "never turned a hair" and she was off the ventilator immediately.  Her vital signs are all good.  She looks great, a little puffy from the extra fluids and still dazed from the anesthesia, but doing really well.  She was sent to the NICU at least for the night, but she's in great shape.  Of course, we expected nothing less of our little champ.

Now the news.  We were a little off in the previous post about her PICC line.  They didn't move it to the other leg; they just repositioned it in different site on the same leg.  Keeping PICC sites healthy is a huge thing for a kid who might need the line for a while, so it's great that they can keep using the site.  They did take a biopsy of her liver, just to be on the safe side, but it looks healthy in the opinion of the surgeon.

The results of the contrast study were confirmed.  She has her entire large intestine, apparently intact.  She has an intact ileocecal valve (the one between the small and large intestine) and hanging off the end, they found 26cm of apparently viable small bowel.  They also found a stray piece of apparently viable small intestine just hanging out and the piece that we knew she had has grown.  Her previous measurement was 20 cm of small bowel from the base of her stomach (the pylorus) to her ostomy.  That included her whole duodenum and a piece of jejunum (about 10-12 cm).  Her current measurement of small bowel is 45 cm from the ligament of trites (at the end of the duodenum).  That includes both jejunum and ileum.  When duodenum is added in, it's more like 60 cm.  She has all three types of small bowel tissue, an intact ICV and her entire colon. Her ostomy is gone; the feeding tube remains, and will for a while.  We still have a lot of work to do in terms of rehabilitating her gut and getting it to do the job of a full-sized small bowel, but this news is as good as we could get and much better than we had dared to hope for.  Her surgeon had previously estimated that she had a 1% chance of coming completely off the IV nutrition.  He's now saying she has a 75% chance.

Now what?  Well, the short version is that we wait for her to poop.  Once she does, we'll have an indication that her bowel is functioning and then we'll start feeds.  We have to remain a little guarded because there is still a possibility that some portion of her bowel won't function or that the sutures won't hold or any number of other things, but this really is the best news we could have had today.

She's in the NICU for now, a little uncomfortable, but doing well.  The next few days are likely to be full of updates and we'll try to post as they come up.  We want to thank all of you who read regularly for your support and thoughts today and over the last few months.  All three of us have a long way to go, but knowing that so many people are cheering for Blaise makes a world of difference.


Meg said...

what incredible news!!! i'm so happy for all three of you. way to go, blaise!! :) :) :)

barb haden said...

Erin and Ben,
We were so thrilled to read the great news. What a true little miracle Blaise is.
We will keep the prayers coming.
Hope you can get some well deserved and much needed rest tonight.
Hope Gran is doing well too.

Blessings and love,
Barb and Jon Haden

Adrienne said...

That is fantastic!! Oh I'm so happy! Yeah Blaise!!! Sleep well tonight guys.

Yuko said...

Hooray!! Thanks so much for posting all the updates. And ligament of Treitz! That's what I was trying to remember when we spoke in Denver, Ben. We are so happy for all of you, and wishing you a restful night.
Yuko, Randy, Max, and Kai

Jarasa said...

Much joy and happiness on our end to hear this wonderful news!! Blaise has a real knack for having one amazing surprise after another for her parents, and continuing to rewrite the odds in her favor. (Behind those knowing smiles, you just know she's thinking, "statistics? Schmatistics! I'll show them!")

Sleep well knowing your little girl is just amazing.

Grandpa Tom said...

This little girl keeps surprising people, and she's done it again. I can't wait to come see her, and for all of you to go home together soon.

animallover said...

There are cheers rising up over Brookside with your news tonight!!

Prayers for Blaise's continued progress, and hugs to you all--
Nancy Fitzpatrick

vicki said...

This is such great news! Thanks for being so diligent with the updates. I’ve been watching the clock all day. I can only imagine how tense it must have been for you. Hugs to you all. Rest now and when you wake give that angel a big hug and kiss from all of her fans in KC.

jumat said...

Excellent!!!! Blaise's fan club in Paris is very happy!
Time for you to get some sleep...

Little Erin, Julie and MAthieu

Ruth Rosenholtz said...

Thanks for the update, Ben & Erin. Blaise, good job with growing that intestine, you little trooper! How nice to have such promising news.

Eliza said...

What a little champion, Blaise! I couldn't be happier to hear the good news!! What a lovely surprise you were saving for your mom and dad :)

EJT said...

Hi Erin and Ben!

So glad to hear there's good news! We're all thinking about you guys and can't wait to get back and see this tough cookie of yours!!

- Elena

Katherine said...

Go Blaise! What wonderful news!

wyngo said...

It's great to hear the good news. Blaise is adorable. I hope to meet her sometime soon.


PS - The spirit of the stairwell says hi.

Megan said...

Erin and Ben,

yay Blaise!!!! Mateo and I are cheering with this happy news! I've never been so excited about an intestine in my life.

Thanks for all the updates, you guys are amazing!

hugs to all three of you!