Home › Forums › Infant Reflux Support › HELP!!! › GTUBE – Lauralee and Janice..
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February 27, 2006 at 5:42 pm #2596AnonymousInactive
As much as I dont want him get a g-tube, we arent ruling out the possibility. I’ve had such a hard time with him lately. He’s really starting to fight when he sees the bottle, or even the cup. And he’s grabbing and hitting the spoon out of my hand when I’m trying to feed him solids. I really try not to force it, but he isnt gaining any weight and I feel like I HAVE to get him to eat. I’m probably doing more harm than good, but I dont know what else to do at this point.
Our GI told us that he would never put a tube into a baby who is gaining weight or who isnt FTT. The doc we saw for our second opinion had a completely different opinion, and he’s the one who wants to do the tube so we can take the stress of eating off of Noah. I can see his point.
All I know for sure is that he isnt getting any easier to feed. Once he stops sleep feeding, we’re going to be in trouble. There’s no way he will take in enough to sustain himself. The older he gets, the more difficult its getting. I was hoping it would be the other way around.
February 27, 2006 at 6:40 pm #2603AnonymousInactiveI’m sorry to hear that. I was hoping that things were getting better when you mentioned that he was taking a bit of solids. Maybe he’ll turn around soon (I hope) so that you don’t need to go the route of the tube. It doesn’t look like there are going to be any easy answers or quick fixes for us. Hailey has not gained any weight in the last month, and has even lost about half an ounce over the past few weeks, but because I’m the only one that’s weighing her, the docs don’t really know that. Hailey’s will is also getting stronger day by day, and I feel more tired by all this (and so bad for my two year old) as time goes on. When Hailey sees a spoon she just arches and turns her head away.
Did your doctor say that he’d also want to do a fundo if he did the g-tube? I’d rather not do one if I didn’t have to, as I’ve heard that for many children they need to be redone often. I really don’t understand how they can create artificial joints and limbs, but can’t perfect this surgery a little bit.
Good luck to you guys. I hope that things improve for Noah.
February 27, 2006 at 7:02 pm #2608AnonymousInactiveThais – Christian’s eating pattern right now is:
24cal formula 360 ml over 8hrs overnight via tube
Solids offered 3 times per day (typically eats 4-6oz total), we keep with bananas and yogurt because they are high in calorie.
He takes 3 (4-5oz) bottles during the day. They are at 30cal/oz we use Alimentum at 24cal, 2 1/2tsp (8cal/tsp) polycose, and 1tbsp rice cereal for flavor and (15cal/tbsp) to make up his bottles.
On an average day we hit between 750-800 calories. This is down from his average a few weeks ago where he was clearing 900 calories per day.
At his 9mos appt he weighed in at 15lbs 14oz and 28 inches. So my little man was way under the charts. We go in tomorrow for our follow up – hoping for huge weight gain.
Lori – Christian did NOT have a fundo done with his g-tube…so it is a possibility to have it done without.
I will get pictures of Christian’s peg tonight and email them out tomorrow to those interested.
February 27, 2006 at 7:06 pm #2609AnonymousInactiveJanice – I have a couple of questions for you. I saw on your carepages that you are dealing with granulation tissue. How does your doctor handle it? Has it ever left a pink/bloody type discharge?
I don’t heal well and I think that Christian has inherited that from me. He has some tissue and they have used the silver nitrate stuff on it – but that is making very slow progress. We go in tomorrow and I want to discuss further options with the surgeon and the button option.
Thanks for you input.
February 27, 2006 at 10:41 pm #2631AnonymousInactiveI am emailing pictures to the people that requested them. If you have anyproblems recieving them, let me know.
February 27, 2006 at 10:59 pm #2632AnonymousInactiveLaura~
As for the granulation tissue, she had it over and over for a while but it has almost stopped since I quit putting the gauze sponges between the skin and Mic-Key. Now I just put a small piece of a nursing pad on either side of it to absorb the drainage. It also helps to not tape it at all, I rarely tape it. It seems to come back more when her immune counts are low, I guess that her bodies defenses are down at that time. It is hard to know with Samantha with all she has going on in her little body. The g-tube has helped us in many ways, but it has not really helped us put weight on her. I think that it helps us maintain her weight, but she is still not really gaining. She gets 32 oz of Neocate 1 + a day (960 cals) But at least we are staying at 20 lbs and not below.February 28, 2006 at 2:44 am #2635AnonymousInactiveLaura
Let me know how teh appointment goes… i do hope he has gained some weight! I thnk that we are targeting approximately the same calories right now. We have usually a good week and a bad week because when he gains OK we try to take the tube away for some feedings and try to get him to be hungry… we are also going to ped today, and i know he has lost some weight, but i don´t know how much. Will know tonight! I am thinking of getting a couple of days off from eating and giving Matthew continous feeds for those days… he is really starting to fuss with teh food and he needs a break and so do i!!
Janice — thank you for the pictures. Saw them and the button looks good. I guess i had not realised that the tube was so thick, i guess that you can get thickened formula through it for example, vs the NG tube which is so thin i can get nothing in there and have to dilute all meds a lot
Lori and Lisa– i know all this might look scary. It took us some time to get used to the NG tube and i am sure we will have an adjustment period for the G tube, but as i said before, we had ran out of options and Matthew was either going to dehydrate or we needed to do the only thing possible because he was not eating. He had had hunger strikes before but i knew on his last one that that was it… I pray that you guys will not need a tube, but really, if you ever do, it is so much better than it sounds or even looks. And there will still be eating times for fun 🙂
February 28, 2006 at 2:30 pm #2666AnonymousInactiveSo we went to the ped. He said that MAtthew is still looking very good and is really active and happy and he is still hoping for a recovery soon… he said that he is thinking about the Gtube but he is not there yet. He will think about it more this week and let me know next week, but he thinks we still have another couple of weeks before we make the decision…
He said that usually, when you know that the NG tube is going to be in for more than 4/6 weeks you put in the G tube but he says that peds go back and forth between this and he has been thinking about it and wants to wait a little bit longer.
He also said that i cannot feed Matthew for those 2 weeks. He does not want me near him at any of his meals (that means a ton of work for my mom and a girl that helps out from time to time). He wants to see if that makes any difference at all.
So, we have 2 weeks and then he said that if he is still not eating then we go for G tube and it can be done here or in the US.
February 28, 2006 at 5:51 pm #2707AnonymousInactiveGood news about Matthew, Thais. I’m glad that the ped thinks he is looking well and might recover without needing a g-tube. Why doesn’t he want you there at mealtime?
Janice and Laura- thank you so much for the pictures. It really helps me to see what the tube looks like. Laura, does the tube part come off or is it always attached (sorry if this sounds so dumb)!
February 28, 2006 at 8:26 pm #2718AnonymousInactiveLori – Nope – what you see is what is always attached. That is why we are so looking forward to the mic-key or button like Janice’s daughter has. The tube can get caught and even though it is not likely to get pulled out – it requires that we be extra cautious and a baby learning how to walk isn’t always cautious.
We had our GI appt today. Christian is still at 28″ and is now weighing in at 16lbs 3.8oz. The GI is happy with the weight gain and hopes that he can gain between 1.5 and 2lbs by our next appt in April (at which time we will schedule the button surgery). We are going to modify the formula he receives at night to a higher concentrate (27cal) and work on “stretching” his belly. Starting with 5oz ea feed and increase gradually to 6oz per feed (over the period of a couple of weeks). We are going to run 50ml for 8hrs over night. And as Christian approaches his first birthday we will work on moving into a pediasure type product instead of a formula.
The GI wanted to change to prilosec compounded..insurance doesn’t cover it and it would be from $80-100 per month and that is unrealistic so we will stay on the prevacid solutabs and just keep flushing the tube to keep the pieces in the belly. We are also going down to 3 times per day on the reglan and will eventually stop that all together. I am ready for a med free trial but they indicated that given the tube is there – the stomach acids need to be neutralized so if they were to pass through the stoma – it wouldn’t cause any damage. I hadn’t even thought of that.
We also got a referral to an OT for some “sensory motor/integration” type issues. God knows what that means – but guess we will check it out. We also got a NO when it comes to putting Christian into daycare. They feel that he is still a little “one on one” and perhaps we can consider it when calories don’t need to be monitored so closely and he wouldn’t be “forced” to eat…too many changes in daycare teachers might cause someone to forget and hurt him or his progress. Not that I really wanted to go back to work – but some days it is really tough.
Just an update. Thanks for listening.
February 28, 2006 at 9:16 pm #2719AnonymousInactiveLaura,
I’m glad to hear that Christian has gained weight, and hope that he continues to progress so well. I too am now facing the same dillemas regarding returning to work or not. It’s a very difficult decision. I know that I likely need to stay at home with Hailey as she doesn’t eat, but then I sometimes wonder if she might do well with some role modelling from the other children (not that watching my 2 year old eat has rubbed off on her any). Our doc also thinks it would be best if I could stay at home with her, and I’m struggling with the reality of having to go through another year or more of this, and likely to lose my job as I doubt that they’ll give me such a long leave on top of my maternity leave.
As for the tube, I can see how it might get pulled or dragged if your little one is on the go, so I agree that the button might be easier that way.
Thank you again for sharing this with me.
Thinking of you both.
March 1, 2006 at 4:57 am #2734AnonymousInactiveLaura – so great that he has put on weight!! Seems like you guys are doing pretty well! And little Christian is so cute in the picture. We used to have Matthew on 35ml per hour at the beginning and worked our way up in a week… and he can handle the 55ml but we are only doing 4 hours…. although sometimes when he does not have dinner, i just put him to bed and run it for about 7 hours, so i am sure that Christian is going to do great! Going back to work…. we are there too. I cannot possibly leave MAtthew alone with others for long — i think that because we are doing a combo of solids and tube you have to be careful to understand how much he needs through his tube, so i am not yet going back to work. I do miss it but i have realised that my little one needs me and i am still hoping that maybe in a couple of months he will do a total turnaround and i will be back at work and everyone will be happy!!
Lori – the ped thinks that maybe part of the mother-baby bonding has been lost because of the feedings. He said that IT WAS NOT MY FAULT or anybody else´s but that it may have happened and i can have someone else do at least some of his feedings, and not be there when he is having a tough time eating, then it may affect his whole view on feeding… don´t know if it makes much sense but have been doing some research and some people talk about it, so we are going to give it a try. I am so lucky i have people around to help me… but i know that possibly i am going back to NY in a few weeks, so we will see how we handle that :-). Doctor is having second thoughts on teh G tube i think… i am going to hospital today to pick up a couple of new NG tubes (Matthew destroys the metal part because he closes his throat so tight he he he) and he will talk to me for a bit about it – he is torn because Matthew is doing so well on the NG tube and is so happy… he is reconsidering his view about the G tube… who knows!!
March 1, 2006 at 5:53 am #2735AnonymousInactiveKeep us posted, Thais. Hope your visit goes well today. You will be back in NYC in a few weeks?
March 1, 2006 at 6:29 am #2736AnonymousInactiveI think we are going to get back at the end of the month, yes. I am totally comfortable with teh NG tube and feeding Matthew and i have learned a great deal seeing the ped every week… hopefully we will do OK and our new ped is as good as the one here (and there is always email and phone and my ped here said that if i ever suspect Matthew is not doing well or he is not happy, to bring him back :-))
March 1, 2006 at 7:37 am #2737AnonymousInactiveThat sounds good! Who is your new Ped when you get back?
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