Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 Our story was very similar, with failed swallow study. Before that, Maureen had an unexplained pneumonia, which may have been aspiration related. I resisted at first, but it doesn't have to be a life sentence. If its taken out, it heals right up. We got the g-tube first, which was a pretty easy surgery. They sent us home to let the track heal for about a month, then we came back and they replaced the g-tube with the Mickey button. It really is easy to care for. We still do pleasure feeds through therapy, but it's very reassuring to know she's getting all she needs. For as much as I fought it, I don't regret it at all. Sent from my iPhone > My 10 mo. son had a feeding study this past Thursday. He was aspirating on liquids and they were not confident about solids. We are currently in the hospital. They placed a feeding tube through his nose. He will be on it for 6 weeks. Because his tongue falls a little back they also wanted to monitor his oxygen saturation. It is good 95-100%. So no tracheotomy. I was very scared that they would have to go that route. In 6 weeks the docs will evaluate his progress and see if he will be taken off or if a button will be necessary. > > A few days a go I was very upset. I felt like a failure. He tried so hard to drink, but it was not working. He also has some inflammation from his reflux. But, today I feel better. He is full and happy. He wants to nurse badly, but he will soon get over that. He was down to 15 lbs and seemed tired all the time. I was also wasting so much time feeding him. I am worried that he may lose his oral abilities. Thanks for the ideas. I got him a few chewiness to bite on. He also likes the thick pretzels. He can't bite through those. I hope he will get stronger in the next 6 weeks. His head control is so much better in just 2 days. > > Thanks for your story. I now know I am doing the right thing for hum. Julissa > > Sent from my iPad > > > > > Bless your heart Kim! Emm is almost three now and I feel the g-tube at just over a year made things so much easier. She wad still eating like a newborn. I would feed her thickened liquid every 2 hours and she generally took in about 4 oz a feeding. She had no time to develop new skills since all her time was spent on my lap eating. She never and still does not hold her bottle. She also needed to gain weight for her heart. She needs surgery to repair two defects and can now have heart cath instead of open heart surgery with her current weight. Yay!! I still do everything I can to keep oral stimulation going so she does not lose oral skills. She has 2 bottles of thickened pediasure and 3 tube feeds per day. She takes 2nd foods but is hit and miss with appetite for those. I make her little " bags " for chewing and tasting so she will learn to bite down and also to control saliva. We use anything from bubble gum to twizzlers or crackers in them. They are safe she can taste but not get chunks and choke. Idk if any of this helps but my prayers are with you. I too was afraid I was giving in to tube but wow I wish now I would of considered Emm! She is thriving! After the surgery she was crawling then walking within 6 months! Something I was told not to expect. Hang in there! If I can help feel free to email or call. . > > > > ~Jodi mom to Emm almost 3 > > > > > > > > > I have just about had it with trying to feed my son. It's this constant daily battle. It's soooooo frustrating. My husband has always been weird about the g-tube because I think he views it as us giving up and taking the " easy route " . I don't think he'd ever admit to that. He also rarely feeds our son, which is fine, not complaining about that. Just don't think he always understands how frustrating it is. > > > > > > Anyway, Just wanting to know how your kids came to have a gtube, for those children that do. My son is not on the charts weight wise and never has been (height wise he tops them). His eating seemed to be getting better, but now it seems like he's eating less and less. He still drinks infant formula fortified to a million calories. I also give him solid foods two-three times a day. It takes 30-90 minutes for each of these eating periods. Some days I skip a solid food meal so he can spend more time on the floor playing or in his gait trainer. He also barely actually eats any of this solid food. He gags a lot and spits most of it out. I usually give him a sippy cup of half and half or fortified formula to go with. That's where most of the fat and cals come from. Anyway, I have a checkup with his pediatrician on Monday and I was going to ask her about revisiting the g tube, maybe doing a swallow study too. I think if he had more meat on his bones he might start meeting some of his milestones. He's 16 months and can sit up unassisted as long as I sit him up and it's only for short periods, depends on what he's doing. He hasn't any teeth yet either and doesn't crawl. He rolls to get around. He has cp on his right side and hearing loss. > > > > > > Also, everyone is always asking me if he points to things he wants, which he doesn't. Do your kids point? When did they start pointing? Just had a speech eval which brought up a thousand questions I hadn't even thought of. So now I'm obsessed with getting him to point. Seriously, why do we do these things to ourselves? > > > > > > Thanks for reading my rant. Having a special needs child can be so rewarding, but some days I just wanna rip out all of my hair. I guess that's true of all children because somedays I'd like the gypsies to take my " normal " and talkative 8 yr old. :-) > > > > > > Peace and love to you all. > > > > > > Kim > > > > > > “I am learning all the time. The tombstone will be my diploma.†> > > — Eartha Kitt > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 For those reading this again I'm sorry for repeating myself. We found out my son was aspirating at five. I realize now he was his entire life. He was constantly sick and could not drink properly from a bottle. I would spend most of the day squeezing the formula in his mouth. The tube was a Godsend. He started feeding and swallow therapy along with vitalstim and after a year twice a week he is not aspirating or not as much. He's healthy and eats like a pig now. I still would not take out the button. We did go through 3 types of buttons before I was happy with one. The GI dr's said its standard for them to have granulation tissue. Which is like scar tissue that is red and irritated. They told me that some kids just have it no matter what. When we switch to a AMT mini one all that went away. I can send you a pic of it if you would like. It does not hurt him at all and in fact sits on the couch and spins it with his little finger and laughs. He rolls around on the floor with no regard for it. To: polymicrogyria From: jodi_blck@... Date: Sat, 25 Feb 2012 20:09:23 -0600 Subject: Re: Feeding difficulties Surgery was easy peasy!! Mind you I have an older daughter who ha had 6 surgeries most of them life-saving. So was simple. I fought the docs month by month. Emm weighed 16 pounds at time of surgery. It's bittersweet. She put on weight and no worries about aspiration but I am always thinking when can we remove it! I like that we don't lose our medicine and essential calories! Emm had RSV last year and it was great knowing she was still receiving nutrients and airway was protected. We stayed overnight when surgery was done and learned to care for tube. I am a nurse so I knew the routine but this is my baby!! We have a mic-key button. It looks similar to a valve in a beach ball. It's easy to care for once you get the hang of it. It is on Emms left side and although you can see it protruding a little it's not really that noticable. Emm does play with hers at times and has pulled it out once. We change it every 4 months here at home. Feel free to ask anything or call or text if you want. ~Jodi > Thanks so much Jodi. It's always so nice to hear others experiences. Love this group!! I think I have taken myself out of the equation and that is why I am not opposed to the tube. My son is strong and doing well in most other areas, but he's 16 months and just barely 20 lbs. what really tipped the scales for me as far as the gtube was last week the stomach flu ran through my house (ugh!). Anyway, I started thinking what if he got a respiratory infection and was out of commission for more than just a day or two, how the hell am I gonna feed him. When he's sick or feverish he usually rejects his bottle and throws up medicine. I am also pretty sure his pediatrician is not gonna be overly impressed with his 3 month gain. He DID gain but not a ton. And she'll wanna discuss the gtube again. I guess I'm preparing myself for it. > > So what's the gtube surgery like? Where is the tube placed, in the side? Thanks! > > “I am learning all the time. The tombstone will be my diploma.” > — Eartha Kitt > > > > > Bless your heart Kim! Emm is almost three now and I feel the g-tube at just over a year made things so much easier. She wad still eating like a newborn. I would feed her thickened liquid every 2 hours and she generally took in about 4 oz a feeding. She had no time to develop new skills since all her time was spent on my lap eating. She never and still does not hold her bottle. She also needed to gain weight for her heart. She needs surgery to repair two defects and can now have heart cath instead of open heart surgery with her current weight. Yay!! I still do everything I can to keep oral stimulation going so she does not lose oral skills. She has 2 bottles of thickened pediasure and 3 tube feeds per day. She takes 2nd foods but is hit and miss with appetite for those. I make her little " bags " for chewing and tasting so she will learn to bite down and also to control saliva. We use anything from bubble gum to twizzlers or crackers in them. They are safe she can taste but not get chunks and choke. Idk if any of this helps but my prayers are with you. I too was afraid I was giving in to tube but wow I wish now I would of considered Emm! She is thriving! After the surgery she was crawling then walking within 6 months! Something I was told not to expect. Hang in there! If I can help feel free to email or call. . > > > > ~Jodi mom to Emm almost 3 > > > > > > > > > I have just about had it with trying to feed my son. It's this constant daily battle. It's soooooo frustrating. My husband has always been weird about the g-tube because I think he views it as us giving up and taking the " easy route " . I don't think he'd ever admit to that. He also rarely feeds our son, which is fine, not complaining about that. Just don't think he always understands how frustrating it is. > > > > > > Anyway, Just wanting to know how your kids came to have a gtube, for those children that do. My son is not on the charts weight wise and never has been (height wise he tops them). His eating seemed to be getting better, but now it seems like he's eating less and less. He still drinks infant formula fortified to a million calories. I also give him solid foods two-three times a day. It takes 30-90 minutes for each of these eating periods. Some days I skip a solid food meal so he can spend more time on the floor playing or in his gait trainer. He also barely actually eats any of this solid food. He gags a lot and spits most of it out. I usually give him a sippy cup of half and half or fortified formula to go with. That's where most of the fat and cals come from. Anyway, I have a checkup with his pediatrician on Monday and I was going to ask her about revisiting the g tube, maybe doing a swallow study too. I think if he had more meat on his bones he might start meeting some of his milestones. He's 16 months and can sit up unassisted as long as I sit him up and it's only for short periods, depends on what he's doing. He hasn't any teeth yet either and doesn't crawl. He rolls to get around. He has cp on his right side and hearing loss. > > > > > > Also, everyone is always asking me if he points to things he wants, which he doesn't. Do your kids point? When did they start pointing? Just had a speech eval which brought up a thousand questions I hadn't even thought of. So now I'm obsessed with getting him to point. Seriously, why do we do these things to ourselves? > > > > > > Thanks for reading my rant. Having a special needs child can be so rewarding, but some days I just wanna rip out all of my hair. I guess that's true of all children because somedays I'd like the gypsies to take my " normal " and talkative 8 yr old. :-) > > > > > > Peace and love to you all. > > > > > > Kim > > > > > > “I am learning all the time. The tombstone will be my diploma.” > > > — Eartha Kitt > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 Ian has a gTube and it was hard for us to get our heads around saying okay to it. He was still in the NICU when they placed it and we just wanted him home and that was the only way he would be able to be released. He will be 2 in a couple weeks and it is now only used for meds. We kept working on him eating even with it but we supplemented him through it until he coordinated enough to eat on his own, which took a while. We also used it when he was sick with colds and such in the hospital. He now eats like a champ! He is on, and has been on, quite a lot of meds and I could not imagine feeding them all to him through his mouth. Especially when we had midnight doses, which we just weaned off a couple weeks ago. With all the work you've done, I'm sure it will not end up being the " easy route " . I bet you will continue to work with him while having the comfort of knowing he can grow without you having to stress out every time he tries to eat. For me, life was tricky enough for without that stress. And I wanted Ian to get it without me pushing him to hard. Another note is that we started with a Peg Tube. Our GI doc said it was the best and it would last 7 years. I accidentally got it caught on a toy car steering wheel when he was just over 1. They eventually replaced it with a Mic-key and it's so much better! The peg would get caught on things and hang out. The Mic-key does come out, as it did tonight in fact, but I just put it back myself. And it's so much less noticeable. Good luck with your decision. These kind are never easy for us! > > I have just about had it with trying to feed my son. It's this constant daily battle. It's soooooo frustrating. My husband has always been weird about the g-tube because I think he views it as us giving up and taking the " easy route " . I don't think he'd ever admit to that. He also rarely feeds our son, which is fine, not complaining about that. Just don't think he always understands how frustrating it is. > > Anyway, Just wanting to know how your kids came to have a gtube, for those children that do. My son is not on the charts weight wise and never has been (height wise he tops them). His eating seemed to be getting better, but now it seems like he's eating less and less. He still drinks infant formula fortified to a million calories. I also give him solid foods two-three times a day. It takes 30-90 minutes for each of these eating periods. Some days I skip a solid food meal so he can spend more time on the floor playing or in his gait trainer. He also barely actually eats any of this solid food. He gags a lot and spits most of it out. I usually give him a sippy cup of half and half or fortified formula to go with. That's where most of the fat and cals come from. Anyway, I have a checkup with his pediatrician on Monday and I was going to ask her about revisiting the g tube, maybe doing a swallow study too. I think if he had more meat on his bones he might start meeting some of his milestones. He's 16 months and can sit up unassisted as long as I sit him up and it's only for short periods, depends on what he's doing. He hasn't any teeth yet either and doesn't crawl. He rolls to get around. He has cp on his right side and hearing loss. > > Also, everyone is always asking me if he points to things he wants, which he doesn't. Do your kids point? When did they start pointing? Just had a speech eval which brought up a thousand questions I hadn't even thought of. So now I'm obsessed with getting him to point. Seriously, why do we do these things to ourselves? > > Thanks for reading my rant. Having a special needs child can be so rewarding, but some days I just wanna rip out all of my hair. I guess that's true of all children because somedays I'd like the gypsies to take my " normal " and talkative 8 yr old. :-) > > Peace and love to you all. > > Kim > > > “I am learning all the time. The tombstone will be my diploma.†> †" Eartha Kitt > Quote Link to comment Share on other sites More sharing options...
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