After attending Jordan World Circus, thanks to the Starlight Children's Foundation, @ the Puyallup Fairgrounds...Summer LOVED the ponies, elephants, and especially the high flying acrobatic Ariel princesses (her favorite...she kept saying "printhess, ahh, ahh, ahh (like Ariel's singing) 3-12-2011

Thursday, December 10, 2009

Life changing news :)

So, here is the official scoop.....

Yesterday at GI clinic, Summer weighed in at 20 lbs. 5 ounces! In two weeks she gained 5 ounces :) She has been on 95 ML's per hour for a week now and tolerating it just fine...her labs all looked great. So, with the formula goal met and the nice weight gain......we got an early Christmas present....

No more TPN!!!!!!

I was sort of expecting to hear this, but didn't believe it could really be so.....well, it is. The medical team in the room were all smiling from ear to ear.....I was in shock.

For now, we will not give her any TPN in her IV, but still maintain it for another 4 weeks when they will make the final determination whether to take out her broviac line permanently or not. Summer will have her first check-in in two weeks....then Jan. 5 will be the appt. to decide if it stays or goes for good!

I don't know if anyone REALLY knows how BIG a deal this is for our daughter. This is the baby, who was left with only 10% of her bowel, so we were told she would likely be IV dependant for the rest of her life....which meant, a much shorter life for her. If she were to be on TPN always, it would cause liver damage, which would lead to liver failure, and more than likely also a bowel transplant. With these factors in play, her life expentancy was only 3-4 years old. When I was told this, I immediately starting thinking about all the things she would miss out was devistating news.

Well, in the words of a good friend of mine, NEENER, NEENER, NEEENER!!!

Summer is now 17 months old, and if all goes as planned, she will have the IV removed when she is just 18 months old :) I was told a little while ago, by a fellow Children's hospital mom, that these kids don't follow the "rule" book....they don't know they aren't supposed to defy odds and do things the docs think they can't! Yay Summer!!! I am so happy she drums to her own beat :) Let's just hope this strength doesn't come back to bite us when she is a teenager! haha!

Merry Christmas and Hap, hap, happy New Year to us!!!

We also discussed her feeding tube. She currently has an NG tube (ye ol' nose noodle). We had discussed the possibility of installing a G tube (a "button" is installed in the stomach and the tube is inserted through the port there) a few months ago, but decided against it because of the disruption to her gut it would cause. The doc thought she might progress a little quicker with her oral feedings, so we were hanging on to the nose noodle. Summer isn't very far in her oral feedings at the moment, so she is still going to be dependant on the tube feedings. They want her to have the G tube put in. This can be either surgical, or non surgical, depending on the state of her gut. She will be getting a belly CT done soon to take a look and see which option is better for the line placement. Removing the NG tube will decrease her acid reflux, help out learning the eating/swallowing process (removing the tube from the back of her throat), and help with her face. Anytime I have had to remove the tape, or it has been ripped off, her face breaks out for about a week....she has lived her entire life with tape on her face! I have to admit it will be nice to see my daughter's cute cheeks without tape all the time! Summer is also starting to roll more frequently and has tangled her neck up in her feeding tube.....all around, sounds like the G tube will be a good option. The procedure will require an over-night stay at Children's, so we are going to schedule it for Jan.

So, keep the prayers's obviously helped so far! Thanks for all your support :) It's nice to know we have a cheering section!

1 comment:

  1. So dang excited,tickled, happy, can not think of enough adjectives for you!!