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

Wednesday, December 30, 2009

Surgery #8 coming up!

Today we met with a surgeon to discuss placing a G (feeding) tube in Summer's stomach. She has had the NG (nose noodle) now for a LONG time, so they feel it would be best to install the G tube for her feeds. Summer is getting a little more mobile (she has been rolling over more often), her face is getting more sensitive to the tape, there is a chance of her pulling the tube out half way while she is sleeping and could aspirate, the tube is down her throat and could be affecting her ability to learn to swallow, putting the tube back in is getting more traumatic for her (and me), and many more. She has been running 100 ML's per hour 24/7 for a few weeks now and is doing great! However, she is no where near where she needs to be to not have some kind of feeding tube, so it's back to the OR to install it.

A couple of weeks ago, Summer had a CT on her belly and they discovered her stomach is hiding behind her intestines (maybe it wanted a better view of the food heading out?)....things shift around when the operate on the surgery would be necessary to place the tube. Sometimes they can put the G tube in with a scope that goes down the throat, but of course, in an effort to be "different", Summer can't go the easy route! The G tube will be a "button" that is flush with her looks like a plug for something inflatable, hmm, hope nobody mistakes her for a cute parade balloon! We will open the flap, insert the tube, then start the feeds. I have heard it is very easy to use and is not as invasive as the NG tube is....we'll hope for that!

We also discussed her Broviac IV removal. Summer has been off TPN now for 3 weeks and as of last week, she was holding steady. Her blood sugar is normal, she had gained 10 grams per day (the goal was 4-10 grams per day) and her liver function made a huge jump in the positive direction. We check in next week (Jan. 5) with the GI doc and nutritionist, and as long as she is still looking this good, they will give the OK to pull the IV out permanently!!!

The surgeon told me that if given the OK to pull the IV out, he will do it when she goes in to have the G tube installed :) This is great news....we thought she was going to have to have 2 separate surgeries for these 2 procedures :) He also said that, when she is ready to be done with the G tube (he is predicting many months), that the site will likely need to be closed surgically. He suggested that he could fix the gaping hole they left in her chest from the first IV that was removed. And, if he can use the current incision site on her abdomen for the G tube surgery, he will try and clean up the scar, which is pretty gnarly.....hmmmm, maybe we should pass or she might decide to wear a bikini someday....sorry, hubby...these surgeries could have a little plastic surgery bonus on the side....without the bill later for a vain teenager, ha ha!

The surgeon is one who is very familiar with Summer, and remembered details about her previous surgeries from over a year ago. He was very impressed with the progress she has made and was VERY happy for us that she could have the IV taken out soon. He said that none of the surgical team would have predicted she would do so well and look as great as she does now! It's so nice to be able to say....PPPPPLLLLBLBBBBB! Neeener, neeener, neeeener! Thank you prayer :) Way to prove them wrong Summer! :) :) :)

HAPPY NEW YEAR!! Looks like we are starting ours off right!

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