Saturday, September 19, 2009

G-Tube Drama - 9/16

Averi’s crazy G-tube is more hassle than it’s worth! It comes out fairly often, it’s red and irritated, and the only reason we keep it is the small fact that it is the only way to feed her (details, details). Here is a small glimpse of what we deal with on a daily basis:

On Wednesday I decided to give Averi a bath. I know that’s not normally a big decision, but it’s quite a process with her, especially when only one adult is home. The surgeon told us to take out her G-tube every once in a while, for 30 minutes, to let the hole close a little. (It’s a lot like an earring hole, so it will completely close if left empty for several hours.) I took out the G-tube and then taped gauze over the hole so her stomach contents wouldn’t run out all over the place.

The bath went well and Averi continued to be happy as I started to put all of her accessories back on. Then it was time for the G-tube, which we save for last because it is always accompanied with hysterical screaming. I put it back in, inflated the balloon, applied her 3 different topical ointments, put on the foam gauze, taped it all down, and then opened the tube and stuck a syringe in it to let all of the air out (her version of burping).

Nothing happened. This is a bad sign because it means that the tube is not in her stomach and I have inflated the balloon somewhere inside her abdominal cavity. No wonder she’s screaming so hard there’s no sound coming out. I even tried flushing the tube with water to make sure nothing was blocking it and the water squirted out the side of the syringe.

I pull all the tape off (which is always fun because her skin is so sensitive and often bleeds), take off the gauze, deflate the balloon, and take out the G-tube. This time when I try to insert the tube, there is resistance and bright red tissue is bulging out of the hole. I decide to test it before taping everything down and still nothing happens.

Once more, I take it all out and try to reinsert it. Afraid that the hole might have closed too much or I can’t find the hole into her stomach, I decided that if this doesn’t work I will have to take her to the emergency room. As blood starts to run down her stomach, I put the tube in one more time and tape it all up. By now, Kaili, my helper, has thrown away my tape, put the clean gauze around the hand sanitizer dispenser, and dropped the feeding tube on the floor. (This picture was taken before the drama started.)

Forty-five minutes after I first put the G-tube in, I cross my fingers and start her continuous feed in hopes that it will do something. I then cradle Averi to calm her down. Completely exhausted, she falls asleep quickly. After laying her down, I check the tube and the milk still isn’t going down. I try one last time to flush it with water and, miraculously, it goes down. Relieved, I restart the continuous feed and begin cleaning up.
I think I will wait for Dan to come home before trying that stunt again!

12 comments:

brandy said...

I don't think I could handle that Tiffany. I think I'd be the one crying hysterically over my baby having to deal with this. You and Dan are SO amazing. What a relief that you didn't have to take her to the ER for more drama. Let me know of a good day to come and get Kaili. She would have fun playing with Aaron and Kaylee, and we could do some crafting while you snuggle with Averi!

Melinda said...

Again, I say...you are amazing!!

Glenn and Melanie said...

OK Tiffany - two comments from mom!
1. That picture of the hole is a bit graphic!!!!
2. I wish I were there to help - here is a blog hug and kiss for you and for Averi and Kaili and Dan!!!! xoxoxoxo

Leah said...

Ok Former GTube mom here. That stoma does NOT look right! I have NEVER heard of being told to 'take it out once in awhile to let it shrink down". That just is NOT right! I would see another surgeon for another opinion. It looks like the tube is too big, and she should have a smaller one. Also, you have to make sure the balloon is full enough to be tight, but not so tight that it causes irritation. There is a very fine line. You should NOT be having this many problems with that site! I'm assuming she's getting alot of drainage, and that's why all the gauze. However, all that gauzes causes bacteria (particularly staph) to grow. The moisture getting trapped in there is just plain bad. Somebody on downsyn (do you post over there?) just said something the other day about finding something that works better than the 2x2 gauze. I'll go look and see what it was that wicks the moisture away better. Anyway, that site needs to get air to dry out.

Leah said...

Me again! I'm just reading back....is this a BRAND NEW gtube site? If so, it's really unusual that you're having to change the tube. Most surgeons have you leave it alone for a good 6-8 weeks UNLESS it comes out on it's own. (my daughter had her's done twice, and each time it was sewn in place so it couldn't fall out.) Really, this makes me want to say again, get another opinion from another surgeon OR a wound specialist.

Lauren in GA said...

I so appreciate you sharing all of the details, Tiffany. I know it isn't easy to find time to blog when everything else is going on.

I have to say that a G-tube sounds like it is a million times harder to deal with than oxygen. Bless your heart and bless little Averi's tummy.

Your humor is so fantastic...I know I said that before but it totally is, when you said, "details, details" I had to laugh. You are my hero...totally not kidding.

Heather said...

Hi there.I found you through another mom on facebook and first let me say ... your daughter is just absolutely beautiful.Just beautiful.I am sorry her little journey thus far has had some bumps along the way.We know a bit about bumps here in our house as well.Second,may I be so forward,the complete stranger that I am,and tell you to please see another gastro guy,soon.Her little site should not look like that and it should never be taken out,especially during the first 6-8 weeks.After that they can put in a Mickey-button but till then it needs to heal on it's own without disruption.Zoey has had her's since she was 7 weeks old,she is now 2 and 1/2 so g-tubes and I go way back.Poor little love.I hope she sleeps well and that tomorrow finds her happy and content with a belly full of warm yummy milk.Take care.

The Robisons said...

Can, I tell you again how wonderful you are??? You are a wonderful Mommy!!!

PS. The last picture of her has her looking SO BIG! She's growing up fast!

Stephanie said...

Wow, I hadn't seen her little tummy without the gauze and it does look like it would hurt! I hope she gets a little button soon so that it will make things easier!!

Vanessa said...

That is SO sad. :( What a battle wound! I guess that's exactly what this is... a battle - but at least she's winning! :) I love you guys!

Sara and Todd said...

Tiffany, It was wonderful to catch up on Averi and the rest of your family (on your other blog). Thanks for keeping us up to date. I am thankful the Lord continues to bless and watch over you and your family. Love, Jared, Sara, Amy, Jacob and Isaac.

Josh n Betsie said...

oh man I FINALLY put this on my favorites. So i can check up on avari alot. That poor little girl has been trough a lot and still stays so stinking cute. I hope everything goes well and you can get that g tube out soon.