Quinn is Getting The Tube

[Anonymous]

Well, Quinn went to her post hospital pedi follow up. We’ve been
procrastinating for far too long. Quinn is two pounds under what she
was 2 weeks ago. And still is not eating that well. She will not drink
the peptamin junior nor will she drink milk. The pediatrician said that
for normal kids, he would just not give them anything but milk for
three days. Their thirst will drive them to drink the milk. Sadly, this
has already been tried on Quinn… and it was a failure. She did not
drink anything for three days. The pediatrician has about had it. Quinn
is barely 20 pounds… for 16 months, that’s okay, but she is
malnourished and he doesn’t want her in the hospital every little minor
illness she has. She won’t eat when she is sick and she won’t eat
enough to sustain her weight… And she is sick too much. she is a
little delayed.. and he thinks the tube is probably the best thing for
her. And I do agree with this. It’s horrible and I’m frustrated and
angry and confused… but I discussed this decision time and time again
with doctors, family… W’ve been holding off on it since she was 10
months old and we all agree that we’ve exhausted all other options.
Quinn needs the tube.

Last time, in March, the orders for the jpeg were made. I was about to
sign the paper… but I hesitated and didn’t sign. I didn’t consent. I
thought this was the best decision for her. I thought she was going to
do great. I thought we wouldn’t have to go down this road again. I will
beat myself up over this. I regret that decision. I only prolonged the
inevitable. I only made another hospital stay for her. She was sick
last week because I chose not to follow through with what was
recommended. It’s the only decision about her health that I do regret.
And I’m mad at myself.

The doctor said that we have a month before her GI follow up. Unless a
miracle happens, he is certain that they will recommend the tube
placement as well… especially because they already have. I asked him
that if they want to admit her and do it that same day if I should…
he said absolutely without any hesitation. I think I will call them
tomorrow and let them know what is going on. That she was in the
hospital again last week for the same problem. And hope to get in
sooner rather than wait an entire month… with this running through my
head. i can’t take it anymore.

I know Quinn’s reflux is getting a little worse too. She just seems
more irritable and upset. She’s been arching her back and refusing some
foods. She does eat… just not enough.

Doctor thinks she will need the tube for about two years. Maybe
more… So now… i just want all the information I can get on this
tube…. Quinn is getting a j-peg. Her reflux is so severe that they
want to put it in her intestines instead of her gut. What can I expect
with this surgery? How long will she need to stay in the hospital? I
know long enough to see if she tolerates the feeds, right? What about
recovery? Can there be complications? Will she be intubated?

I’ll probably write more later… I’ve been up for 28 hours and I’m too
stressed to go to sleep now. I’ve been up for so long because I took an
extra graveyard shift to make up for the hours I missed while Quinn was
in the hospital. I should go to sleep now.

-Sarah

[Anonymous]

I’m so sorry that it’s come down to her needing the tube. I haven’t been in that situation so I can say I know how you feel or give you any advise whatsoever, but I wanted to tell you that I really feel for you and for Quinn and that I will continue to pray for her.

Please don’t beat yourself up about not getting the tube earlier. You’ve done what you think is best all along because you love her and you want to protect her. We all know that and I’m sure the doctors and your family all know that you’ve made the choices you made with Q’s best interest at heart always.

Please keep us posted.

[Anonymous]

I’m SO SO sorry that you’ve reached this point. But it really sounds like Quinn needs something to give her a boost, and I’m sure once she starts to grow and thrive, you will be even more happy that you did it. I know that the tube comes with it’s own learning curve and anxieties, but trying to feed a child who doesn’t want to eat is such a terrible stress (I know this). In hindsight, we should have had the tube. Check out http://www.parent-2-parent.com/forum . A few of us with feeding issues also post on that site, and there’s tons of tube fed babies. HUGS. Please keep us posted.

[Anonymous]

I’m sorry that Quinn needs a tube. I know it must feel like a step backward right now, but I really think you’ll be happy with the decision once you get used to everything. At least you won’t have to worry about her getting enough nutrition and fluids. I think her health will improve a lot too. Please don’t beat yourself up about anything!! It’s scary and hard to make these kinds of decisions for your kids and to know whether or not you’re doing the right thing with those decisions.

Bryce has a g-tube, and I honestly don’t know a whole lot about the j-pegs. I would definitely check out the page Lori suggested. There are quite a few with the j-peg there. I’m pretty sure the surgery itself is similar though. For us the surgery only took about an hour (and Bryce had some inguinal hernias repaired at the same time). He only had to be in the hospital over night and was only on Tylenol for a couple of days afterward. It was a very simple procedure. They teach you at the hospital how to feed her with the tube, how to care for the tube sight, etc.

Good luck Sarah! I hope this is the answer for you guys, and that Quinn will begin to thrive with the tube. Hopefully once she gets good and healthy, she’ll be more willing to eat and won’t need the tube for long!

Oh- will she have an NG tube until the j-peg is placed? I wasn’t sure if they did that with the older babies.

[Anonymous]

I have not been in your situation, but you did what you thought was best for Quinn at the time and that is what we are supposed to do! We are not always going to be right, and frankly, you could have been saving her from a surgery she might not have needed. Ultimatly, she does, but she may not have, so if I have learned anything so far, there is no sense playing the “what if” game with yourself.

You are a GREAT mommy!!! Good luck with everything!! You are doing a great job.

Ann Marie

[Anonymous]

Sarah,

I’ve been reading your story on another site since Gabby was diagnosed with reflux. You have done what you thought was best for her all along and that’s all you can do. Quinn knows how much you love her through all of this and that makes you a great mother. Don’t go second guessing yourself now. I have no idea what you are going through, but I want to let you know you are in my thoughts. Good luck with everything. Please keep us posted.

Kathy

[Anonymous]

Goodluck Sarah. My only advice to you is follow your instincts…times change, circumstances change, issues change…do what you think is the best for now (not what has been or will be). Quinn is a couragous and beautiful soul and will know you have always done your best for her.

[Anonymous]

Best wishes to you and Quinn as you undergo this journey. I can only imagine the heartwrench you feel, but like the others have said, you have done everything possible to avoid the tube and now it is probably the right decision. Once you get comfortable with it, you will probably be relieved to not have to worry as much about her eating. You will be in our thoughts and prayers!

[Anonymous]

Hi there

Sorry you have to be put through this. It has been a long journey for you though and i always tell people that the parents/the mom/dad whoever is taking care of the child knows in their heart when it is time for the tube. If you are there, then it is def the best thing you can do for her and i would not hesitate at that point.

Now, a few things to consider… from what i can tell from your post.

1. There are very few GIs that actually go to a Jtube straight, even a Gtube. Most GIs (and this is my understanding) like to do a test trial with the NG tube. they want to make sure that the calories are going to make a difference, that the baby can handle a greater volume of food etc… i would ask about this option. Matthew got the NG right after quitting eating for the third time and he was so skinny/dehydrated etc. Once the NG was in for about 1 weeek, he was a new baby and we never doubted that we really needed some kind of tube… he had not been that happy/ looking good ever.

2. I am really surprised at the J tube surgery though and it is probably my ignorance, but i really have not heard of anyone getting a Jtube because of reflux. Matthew’s reflux was horrible and he still got the Gtube. The J tube is more complicated becuase of the positioning in the duodenum but also beacuse it almost always requires 24 hrs continous feeds at teh beginning. See you cannot put the same amount of food in the intestines as you would in teh stomach, because the intestines absorb the food extremely slowly… so you have to start at rates of 10ml/hr all day… and you can never do bolus feedings. So it is really different. I would get them to try a Gtube (and please don’t listen to me, just get a second opinion) and then they can always add a J extension to it and test if that works best… that would be what i would do if it were Matthew.

Taking care of the stoma etc is really easy and so is changing a button etc. It takes some time to really understand what rates/volumes are good for your child and most people struggle with that at first… but that is with a Gtube… with a J, you start so slow and build it up.

Thinking fo you!

[Anonymous]

Thanks for the information. Well, turns out that we are going to go and get admitted today. They don’t want to wait until she gets sick again so they told me to go to the ER and they would page the doc and we would get the ball rolling. Hopefully tomorrow will be her surgery. As far as the n/gtube… Quinn’s LES is lax. I KNOW this will make a difference in her calories. With such a lax LES, she’s just going to throw up all her food. On top of that, she’s 16 months. She would pull it out and then i would have to deal with a SCREAMING TODDLER!!! <—- not fun. She didn’t like the ph probe too much and pulled it out 2x’s during the study. So the n/g tube would be torturous for her I’m sure. We are going to go in and see what the doctor has to say tonight. I’ll make sure I get as much information on what tube they plan to do and what sort of complications can arise with each one.

I’m very disappointed that it has come to this. But I think it will make a difference in her overall health. My family backs me up 100% and we all agree it is the right decision. We just hate to have to see her go through a surgery. But to see her so sick, just because she won’t eat… I’m sure it will be worth it to watch her grow and thrive instead of spending a few days or weeks in the hospital each month. I hope I’m making the right decision. Somehow, I do believe this is the right decision. i just didn’t think it would be so hard.

Thanks for all the information and support. I have to pack our bags now. I will update when I can, but i don’t have computer access at the hospital. I usually go and use the library down the street if I get the chance.

I hope everyone is well. THANK YOU!!!!

-Sarah

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