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!

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!

Thursday, December 3, 2009

She made it!

I just turned Summer's formula tube feeds up to 95 ML's per hour!!!!! I can't believe it happened (finally)...she is at her formula intake goal....every time she has gained weight or grown, the goal has been increased, sending it further and further out of reach, Summer finally caught up! step, drop the TPN :) Summer has been tolerating the formula increases (only 5 ML's every 4 weeks, though she was only on 90 for a week, before I bumped her up last night to 95, he he). She gained 4 grams per day as of last week's check-up and her nutritionist said if she was doing well, I could turn it up this week, so I did :) She has a clinic appt. next Tues., so if all goes well (keep your fingers crossed, prayers coming, rub those rabbit feet), we will reduce the TPN down even further.

I talked to one of the home care pharmacists yesterday...she called to tell me how excited she was that Summer is so close to dropping TPN. I asked her how fast weening usual goes once the formula goal is met...she said sometimes, if the labs are good, and the baby is very stable, they will just take the TPN need to taper off! She did say, of course, this may not be the case for Summer, but I sure hope it is!

Wow, what a great Christmas present this would be!!!!