Home › Forums › Feeding Issues › Tube Feeding › Quinn Update!
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May 20, 2007 at 3:47 am #33865AnonymousInactive
The nurses are giving me
a break tonight so I was able to come home. Quinn has been in since..
what, Wednesday. She has been NPO (nothing by mouth) since Wednesday
night. She had another Upper GI done Thursday. She refluxed the entire
time. They said everything was normal except that she had severe
reflux. Poor baby. She hated it. She had her g-tube surgery yesterday.
That was hard. I had lots of feelings of regret. Just seeing her come
out of anesthesia was difficult. She immediately started screaming in
pain. the nurses had to come over and give her some demerol to calm her
down. I was crying. It was so heartbreaking. I started feeling like,
What did I do to my baby? Was this really the right decision? I hate to
see her in pain like that. But I think about it and she is in pain like
that everyday from her reflux. It was no different except that this
pain was caused by surgical pain. And i couldn’t do anything to comfort
her. It’s pretty scary to look at. There is a huge tube hanging out of
her stomach and that shouldn’t be there. I hope I made the right
decision for her. I feel like i did. But it is hard. She has been on
continuous feeds of pedialyte since Saturday morning. The docs told me
that normally, the child would be able to go home the next day. But
Quinn’s reflux is so severe, they are taking extra precautions and she
will be in until at least Monday. She is taking only 50cc’s every hour
and she is refluxing like crazy on that alone. She keeps coughing and
choking on it. But so far, no major puking. So that is good. I don’t
think she has ever had such a full stomach. I think she’s always cut
herself off before she gets full because she knows it will hurt. I’ve
seen her gut bloated, but that’s been hard, her tummy is soft and big.
Quinn was 19 pounds when we were admitted. She is finally just barely
over 20 now, with IV’s and continuous feeds and all the new tubing.
Hopefully Sunday we can start her formula and then on Monday, we can
have her eat orally. I don’t know how she is going to do. They said
that if she does not tolerate the g-tube, the doc would go back in and
do the gj-tube. If that didn’t work, then he said that he would
strongly recommend the nissen fundoplicatoin operation. They’ve already
brought it up, but I told them that i didn’t want that done until we’ve
tried everything else. Quinn is in good spirits. She’s been a little
tired, but today she was pretty active. The nurses love how very good
she is. Quinn is a good little girl. She does not fuss during vitals.
She does not cry for no reason… (she does cry when she is refluxing
and in pain and for an obvious reason… which is quite a bit.) But for
the most part, she is a good listener. She did start to hit me, though.
I don’t like that much. She has a made a little friend. Who looks to be
her age, but she is 13 months old. And she is far more sturdy on her
feet than Q, She is more verbal, and weighs more. They are both the
same height. The grandma was like>… oh someone you’re age. When
she asked how old Q was… I said 16 months she just said “oh”. This
stay hasn’t been too bad. the hospital isn’t so crowded and we have had
the room to ourselves. Makes it much easier on me to put Q to sleep at
night. Quinn notices the tube there, she has tried yanking on it, but
she will learn that it is not to be pulled on. For right now, it is
just a six inch tube that comes out of her stomach. In six weeks, she
will need to have the mickey button placed and then she will no longer
have the tube sticking out. You guys just don’t know how much I
appreciate the support and prayers. I believe she is doing so well
because of them. So thank you very much. I have to go now and try to
get some sleep. i need to be back at the hospital at 6:30am. And it
takes 2 hours to get there. Ugh… the drive is starting to get on my
nerves. The first few times are not so bad… but it’s getting
annoying. -SarahI’ve been trying to post some pictures… but for some strange reason… it’s not working the way i used to do it. hmmmmm….
-Sarah
myQTpie 2007-5-20 3:49:12 May 20, 2007 at 7:17 am #33866AnonymousInactiveHUgs – i remember those feelings… i guess that in a sense, we went through phases because we had the NG first, then the G so you kind of get used to the idea of the tube. I am glad all went well. I hope that once you start seeing her grow, develop, etc you will come to terms with your decision. It was the best thing i have done for Matthew.. and looking back, yes we thought he had severe reflu but we are now finding out that there is probably some neurological level somewhere that has caused extreme hypotonia…. so he could have probably never eaten what was expected of him when he was younger.
Just a couple of things — i am surprised that you say she is ONLY on 50ml per hour. Hmmm Matthew could not tolerate more than 30ml/hour without vomitting for a long time… i think 50ml is pretty high for right after surgery, but that is my opinion… they are not usually sore from the surgery but a hole has been cut through their stomach muscle adn everytime the stomach moves to push liquid down, it feels there is damage… sometimes it takes a few weeks for the stomach to get back to NORMAL. This is just my experience…. some doctors want to push nutrition/hydration and from all i have learned from moms, they do not really understand about rates and how they affect your own child.
We had the PEG for 5 months… we got so used to it that i was scared to death when they wanted to switch to the button!!
Matthew was not in the hospital for long but we left having lost a couple of lbs, that took quite a while to get back on…. so she is doing amazing hopefully!!
I am glad they decided to put in a Gtube before the Jtube.
HUGS
May 20, 2007 at 8:49 am #33868AnonymousInactiveSarah,
I’m so glad to read your update! I’ve been thinking of you and praying for Quinn, and so it’s great to hear from you.
All I can say is “HUGS”. I can only imagine what you’re going through, but believe me, that I can imagine it on a level that you only can when you’ve been living on the edge of it for so long. As I said, Hailey should have had a feeding tube, and we had doctors tell us that, so we went through a lot of the feelings around the decision. I know that we never actually had to go through with it, so I can’t say too much there except that it really does sound like you made the right decision. And hopefully watching her thrive and grow will only confirm that for you once the element of fear over the unknown passes. You and Quinn have gone through so much, and I really hope that this is the answer for her. Trying to get a child to eat who doesn’t want to is really an impossible task, and I’ve learned that the hard way, so hopefully this will make things easier on you both and give you some peace of mind that she’s getting the nutrition she needs.
On the note of reflux- Now that they know how bad her reflux is, will they consider upping her dose to give her some relief? I don’t know too much about the impact of g-tubes on severe reflux, but I can imagine that the extra fluid in the stomach would create more chance to reflux. Just a thought.
I really hope that she has a speedy recovery. I’m sure that the tube is hard to look at now, but in a couple of months she’ll have the button and that’s hardly noticeable at all.
Please keep us posted. I’ll be thinking of you.
May 20, 2007 at 9:30 am #33871AnonymousInactiveSarah,
I’m so glad to hear that things went well. I’ve been thinking about you guys. I agree with Thais that 50cc/hour seems like a bit much to start out on continuous feeds. I think Bryce started on 25cc/hour and worked up. Of course he was much younger when he got his g-tube. We’ve actually done mostly bolus feeds with him except at night. I wonder why they place that other kind of tube, instead of just placing the button right away?? Our surgeon told us they don’t use those other tubes much any more because they’re so much more difficult to work with, etc, than the buttons. It all depends on the surgeon and hospital I guess.Well, good luck with everything. I’m sure it’s hard right now, but I think you’ll get used to everything quickly. I pray that Quinn will start to thrive with this, and that you’ll be able to get her reflux more under control.
May 20, 2007 at 10:06 am #33876AnonymousInactiveHugs and prayers!
Thanks for the update and remember that we are thinking of you and Quinn praying for a speedy recovery.
You did the right thing!! And you’re a great mom!!
May 20, 2007 at 12:34 pm #33890AnonymousInactiveGlad to hear the tube placement went well. Quinn will get used to it, and so will you in time. Poor lil one. Hopefully, some relief from her pain is right around the corner. *HUGS*
May 20, 2007 at 12:39 pm #33892AnonymousInactiveI am so glad it went well! Keep us updated!! She will still be in our prayers!
May 20, 2007 at 4:21 pm #33922AnonymousInactiveSarah: So glad things went well. I know the regret feelings. What is best for your child? So hard to know. You didn’t make this decision on a whim. It really was best for Quinn. I truly hope she is bounding off the walls on Monday and ready to leave the hospital! You are a great mom!
May 21, 2007 at 6:16 am #33960AnonymousInactiveSarah, my thoughts are with you and Q. You are a great mummy and she is ab beautiful soul. There are many happy and joyful experiences coming up for you both.
May 21, 2007 at 2:53 pm #33990AnonymousInactivethere are alot of doctors that will not place a g-tube without also doing a fundo—because a tube puts more pressure on the stomach and can actually worsen reflux in some children. with her reflux being so bad, why did they not do a fundo already?
hopefully she is feeling better soon.
May 21, 2007 at 3:16 pm #33998AnonymousInactiveOur thoughts are with you for a quick and speedy recovery for Quinn.
May 21, 2007 at 4:23 pm #34008AnonymousInactiveThanks you guys. i posted another update. The fundo has not been done because… well, I don’t want it done and I’m just really scared of the posssible outcome. So really, it’s me who is turning down the decision… but after the past few days, I think she may need it.
May 21, 2007 at 4:33 pm #34010AnonymousInactivedid you ever get the results of quinn’s endoscopy? is there very much damage? what about the overall percentage of reflux time from her ph probe—unless you have posted that somewhere and i missed it, all i remember is that she had alot of reflux episodes, but you didn’t know the percentage—you also didn’t have the biopsy results yet. sorry if these are repeat questions that you have already answered!!
a fundo is a life-saver for a baby that really needs it. there have only been a few other babies on this board, besides sylvia, that have had a fundo—-but i think that every one of the mother’s was glad that their child had the surgery once it was done.
this is TOTALLY my opinion and may be waaaaaay off, but it seems to me that if quinn’s biggest problem is reflux, and not a weight problem, she would be better off with a fundo than with a g-tube alone. even though it has been alot of work for you, you have been able to keep her at a good healthy weight.
kevieb2007-5-21 16:40:30
May 21, 2007 at 4:41 pm #34011AnonymousInactiveReally? I don’t remember the percentage of the refluxes. I’ll have to get that information from the doctors again. The biopsy results were normal and the endoscopy only showed some esophagitis. A little erosion on the intestines, but nothing major.
May 21, 2007 at 5:08 pm #34014AnonymousInactiveChristine: I see your Sylvia had a hiatal hernia repair = did she have the fundo at that time? (sorry prob dumb question) Was the fundo done ONLY because she had a HH? I don’t see Carson going down a very good path. Summer is here and he is WAY active and eats less than before. I wonder, though, if he still has allergies, will his reflux still bother him due to food problems??
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