Monday, November 12, 2007

G-J Tube is a Little More Complicated

I spoke with the surgeon this afternoon about Julianne's upcoming G-J Tube procedure. He said that you can't do a J-tube without first doing a G-Tube. What they'd need to do is insert the G-tube, via endoscopy and go home using the N-J Tube. We'd let the G-Tube heal for 4 to 5 weeks and then take that tube out. They'd then insert the G-J tube which would go all the way to Julianne's small intestine. The problem here is that we could potentially be at the hospital every other day getting the N-J tube put back in place because Julianne pulled on it.

The surgeon here spoke with one of the surgeons in Boston today about Julianne. The Boston surgeon told him that there is one surgeon there that is doing G-J tubes all at once. However, they've not had good outcomes. There have been some pretty serious complications. Of course, we don't want more complications so we would be going the route I mentioned above.

Here's where it gets more complicated...

The 2nd stage of Julianne's heart surgery can happen any time between 3 and 6 months. Three months is about 6 weeks from now. Which would mean that Julianne would be having the 2nd step of the G-J tube procedure about 1 week before her next heart surgery. So she'd be under anesthesia two times pretty close together. So, if we're going home with the N-J Tube after the G-tube is inserted then why not just keep the N-J tube and not bother with the G-tube if her surgery is going to be at 3 months? So, that is the question. Dr. Young is waiting to hear from the Boston cardiologists about if they have any indication as to when Julianne's surgery might be. If the Boston cardiologists feel that Julianne has more time before her next heart surgery then we'll get put on the schedule for the G-tube procedure. It takes 2 - 3 days once your on the schedule. Then we'll have a couple or three days of healing time here at the hospital. Then we'll go home. So, we'll see...

I also wanted to add that Julianne has not had any extra heart beats in quite a while. So, that is great news! The Amiodorone must be doing its job. I was happy to hear that today.

Julianne gets to take about 10ML from a bottle every 3 hours and today she's not thrown-up or spit-up any of them.

Thanks for checking in on us and for your continued prayers. We greatly appreciate them.


Jen Steele said...

Not that you need any unsolicted advice, but as the mom of a nearly 3 year old, post fontan, serious GI issue HLHS kid, let me urge you to go home on the NJ and revisit the permanent tube business when you get back to Boston.

Giac had about everything Juliane has had with GI issues and more. Never ate more than 15-45 mls by mouth, screamed his head off after taking any food by mouth (he wasn't a vomitter), had horrible reflux by every clinical indication (tho none of more than 1/2 dozen diagnostics could confirm it).

He was in the hospital for 4 months from birth thru Norwood and GT placement -- nearly 2 months of that for feeding issues bc we didn't consent to placing it until he was 3+ months old.

His first year of feeds was awful, on and off every high end formula there was (ending with the top of the line Neocate). He gagged and retched (you CAN'T vomit with a Nissen) with almost every feed after his GT was placed. He was on and off continuous feeds, up to 22 hours a day just before and after his Glenn. Ultimately, it didn't improve until he was more than a year old -- when he began Prevacid, Miralax and a goat milk-based homemade puree of health foody table foods.

Bottom line: the GT saved Giac's life, but need not be rushed into. And GJ's are a much bigger deal than GTs. Your life will likely be all about hospitals this first year -- Giac spent 5+ months in the hospital his first year. IT was awful but IT WILL PASS.

I am happy to share anything you want to know, but the main thing I want to share is not to be rushed into a GJ or GT surgery. They come with their own set of complications and really accomplish the purpose of feeding no better than the NJ/NG but for the convenience of the feeder and the relative comfort of the child (the N tubes are uncomfortable). But it is such a short time in the long run, I would highly recommend waiting until the 2nd Boston trip to make a decision abt permanent tube placement. No doctor will tell you that the heart causes the reflux, but I can tell you from talking to umpteen heart kid parents that it has to, and it gets better as heart function improves with each successive surgery.

Today, Giac is eating and drinking on his own, averaging in recent weeks 1/3 - 1/4 tube dependence. It took 3 years but really the major progress has happened in the past 6-12 months. Just keep in mind that it is a marathon and not a sprint. Juliane's experience will necessarily be unique to her, but I thought I should at least share one similar story. Good luck with the consultations and decision making.

Jen Steele

Naomi said...

It sounds like you all have so much to think about. I will pray that God will guide you to the best decision for Julianne.

Love Aunt Naomi

Anonymous said...

We continue to pray for all of you and God's guidance in the decisions you must make and His privision for Julianne's tolerance. We think of you and pray for you often.

Judy & Neal

Anonymous said...

So many decisions. When the right path is there, you will know which way to follow.

We are glad to hear no vomiting yesterday. Every little step she takes is a step closer to getting home.

We will continue to pray that she progresses steadily and heads home real soon. I know she can't wait to sleep in her own bed!


A. Stac

suzette said...

Dear Jessica and Kent,

I wish that I could give you advice as to what you should do.Unfortunatly I do not have an answer.

I know that you all are praying about it and God will give you the answer.

Getting input from others that have been through it all is good to help you to weigh all your options.

I will pray that God will give you the answer and continue to Bless Julianne.

Love you

Aunt\Great Aunt Suzette

Anonymous said...

we will pray for wisdom for you and the doctors. we will continue to pray for strength and healing for julianne and no complications with any of her upcoming surgeries.
erin c.

Anonymous said...

Dear Ones,
Hang in there---even though it is tough. May the God of all comfort and wisdom strengthen all of you and give you guidance. Praise God for each small step.
Ernie and Carlette B