Wednesday, July 29, 2009

Free at Last!

Babs had her assessment with Dr. Black today at the hospital and she came home completely PICC-line-less. Yippee! In fact, it crossed my mind while I was changing her after our car ride back that she actually has fewer accoutrements than ever in her life! She doesn't even have a bag hanging off her anymore. She's... free!

Now she can bathe as often as needed and go swimming and wear pants or a dress without a onesie underneath or even hang out in just a diaper!

Her disposition is more calm and happy today too. We laughed in the car for about 15 minutes straight on our ride to PCMC. And she wasn't scared of Dr. Black when he entered the room (of course, he wasn't in scrubs today either.) Although she still cries every time she poops and wakes up multiple times during the night, I think she's getting more used to her (now bleeding) bum rash. At least, she doesn't seem as disconcerted by the pooping experience and the subsequent pain.

Our Ilex arrived today in the mail, so we're excited to give that a try and see if it helps get rid of the red. Ilex is suggested by more Hirschsprung's parents than anything else. So far, we've been experimenting with a beautiful cocktail of layered powders and ointments at every change, and it takes us back to our kindergarten finger-painting experiences. True artistes!


JulieAnn said...

Awesome. That's so good, except the bleeding bum thing, poor baby.

How long is that supposed to last?

Anonymous said...

I am so happy! That PICC line had me worried.

Is Bridgette eating better? Apparently with the removal of the PICC line, Dr. Black feels she is doing well enough on her own, but what do you think? Still improving a little each day?

I love you.

jessica said...

Hi there, I found your blog via another Hirschsprung family's blog. My name is Jessica and I have a 2 year old son with HD. I just wanted to say that Ilex is absolutely amazing. Use it like you're frosting a cake, top it with gobs and gobs of vaseline, and don't remove it between diaper changes. I bet her little bum will be better in no time!!

Paul said...

So glad to read so much good news!! Hugs to Bri and you guys too!


Angela said...

I'm so glad she is doing better. And I am so happy for you and Jeff.
Oh, Isabella still cries when she poops so when she stops I'll let you know. Then maybe Bri will stop soon too! I miss seeing her smiling face so we need pictures soon!
Have fun shopping for her. By the way what is her sizes, I might just be sending a care package. :-)
Love to all.
(I am so excited right now, I am giddy)(off to tell Aaron the great news!)

123 checkoutourfamily said...

Yay! Sounds like lots of progress. Sorry about the sore bum but hopefully that'll go away soon.

She's so cute! I can only imagine what it must be like for her to get use to everything. Ya'll are such amazing parents.

Sarah said...

Horray for freedom!!!

Ekho said...

I am so glad to have found your blog. I was looking for tips a couple of weeks ago on dealing with my son's ileostomy, and came across your tips. I've used several of them, and was reading through it again when I noticed the reason your daughter has one. My son also has total colonic Hirschsprung's with small bowel involvement. Bridgette's story and Deagan's are almost identical, and he is scheduled for a pull-through Oct. 29th. I can't tell you how much it's helped to read a real-life story from start to almost-finished. I feel like I have a much better idea of what we're in for now. Just wanted to let you know how much I appreciate your blog, and I hope your little girl continues to do well!

Kel said...

Dear Ekho,

It's great to know you're out there! Total HD kids are so rare! I'd love to talk to you more and hear your story too. Don't know if you'll check back here, but please contact me if you do: [email protected]

Good luck with Deagan! We're cheering for you!