For those of you who follow me on Facebook, you know I've had a HUGE struggle this last week making a decision about Sadie having an NG tube placed. I went back and forth multiple times a day even about should we do it, should we fight it, what are the advantages, what are the consequences, etc.
I had a good talk with a mom at Foundation for Blind Children (FBC) last Friday. Her daughter has a G-tube, which is the kind where they surgically attach a tube into the lining of a child's stomach. She showed me her daughters and explained it all to me (this is actually her second child to have one) and it really made it much less scary.
Many moms via this blog and on Facebook have told me that even though they were scared at first, or even though they hate that their child relies on his/her tube, they are really thankful for it. These moms all say that having the tube as a backup helps with peace of mind in knowing that their child is getting what they need, even if he/she can't take it orally. And many of them have noted that it is also a big stress reliever.
I posted on the P.O.P.S.I.C.L.E. parent forum. (P.O.P.S.I.C.L.E. is a local organization that deals solely with families who have children with eating issues. I joined a long time ago in anticipation of these kinds of issues, and I'm glad I did because now I have this resource at my fingertips) and got a lot of good advice from both sides of the coin.
And I had a good, long talk with Sadie's feeding therapist (whom she hasn't seen for about a month because she's had a family emergency and needed to be out of town). I told her my biggest concern is creating a problem where we don't currently have one. I'm afraid that, for Sadie, having something constantly in the back of her throat might make her reluctant to eat. But Nancy told me that most kids adapt really well to having that tube there and that she is not worried about Sadie having problems with it. Plus, she mentioned that if after a couple of weeks, we're seeing it be more of a problem than a solution, we can just remove it. She told me she thought it'd be a good idea, if the doctor recommended it, to place the tube. She is more afraid of drinking being so stressful for Sadie that she creates an emotional aversion to the whole process of putting anything in her mouth...I guess I never thought of it that way.
So, we went back to GI yesterday. And we saw the Nurse Practitioner, not the doctor (I think he was on vacation or something), and the same Nutritionist/Dietician was there. They were both very impressed with Sadie's progress in 12 days. She has gained over a pound and is doing really well. But, they both told me that in order for her to grow, they'd still like to see her drink more. They told me we could keep doing what we're doing, but they'd recommend the tube just to ease some of the stress on us all. This is kind of what we knew and expected them to say.
I told her that we are prepared to place a tube, but we want to make sure that most of what she eats and drinks is still being taken orally. The nurse and the nutritionist both said that is the best way to do things, and both really felt like this would be a very temporary thing (we feel that way too). So, when the tube is placed, they'll give us a plan. We'll have a goal of something like 4 ounces of liquid in 20 minutes and whatever she can't drink in that time, will go in through the tube. That way we are always trying by mouth first. And who knows, maybe we will hardly use the tube at all during the day, and it'll just be used at night to make sure she actually gets enough.
Sadie has to be admitted and we will plan to stay one or two nights in the hospital in order for all of this to happen. This is so they can place the tube, then keep us to make sure she is okay with it and that we're trained in how to use it and replace it and maintain it. They want to also do a swallow study while we're there. We won't probably do this for a couple of weeks because we're leaving town this weekend, then next week Sadie and I will be staying at Ryan House while Brian is out of town still. Then I have graduation and the events that come along with that. We'll be admitted May 22nd at the earliest.
Thank you for all your prayers. Please continue to pray. We are going to really start working on Sadie's ability to drink. And hopefully in a couple of months the tube can come out and she can do it all on her own!