Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 I've never joined a group like this before, so I'm not really sure how it works. I guess I'll start by telling you a little about my son. Jack was just diagnosed with CHARGE syndrome about 3 weeks ago. He was born with a TE Fistula and and Esophogeal Atresia which was repaired at 4 days old. He was rushed to a NICU an hour and a half away. Then they found the AVSD. He has been in the NICU for two months now and they have slowly uncovered the aspects of CHARGE. He had bilateral Choanal atresia, which explained why he failed extubation 3 times, Coloboma fo the retina in both eyes, micropenis, and as far as we know just extenal ear malformations, however, they have not checked his hearing yet. On Friday they are going to do a fundoplication and insertion of a g-tube then on Monday he's having his second Choanal atresia surgery. I'm pretty nervous about the G-tube. I know they'll teach me everything I need to know but there are little things that the doctors may not tell me. I would really like some advice about the tube. I know that we are all going through the same things and it is comforting to know that I am not alone. Thank you for that! , mom of Jack (2 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 hello, this group helps heaps! i've only been on for a few weeks and have learnt way more than what the docs have ever told me. welcome and i hope things work out well for you. Raine. > >Reply-To: CHARGE >To: CHARGE >Subject: New Charge Mom >Date: Wed, 22 Nov 2006 01:51:25 -0000 > >I've never joined a group like this before, so I'm not really sure >how it works. I guess I'll start by telling you a little about my >son. > >Jack was just diagnosed with CHARGE syndrome about 3 weeks ago. He >was born with a TE Fistula and and Esophogeal Atresia which was >repaired at 4 days old. He was rushed to a NICU an hour and a half >away. Then they found the AVSD. He has been in the NICU for two >months now and they have slowly uncovered the aspects of CHARGE. He >had bilateral Choanal atresia, which explained why he failed >extubation 3 times, Coloboma fo the retina in both eyes, micropenis, >and as far as we know just extenal ear malformations, however, they >have not checked his hearing yet. On Friday they are going to do a >fundoplication and insertion of a g-tube then on Monday he's having >his second Choanal atresia surgery. > >I'm pretty nervous about the G-tube. I know they'll teach me >everything I need to know but there are little things that the >doctors may not tell me. I would really like some advice about the >tube. > >I know that we are all going through the same things and it is >comforting to know that I am not alone. Thank you for that! > >, mom of Jack (2 months) > > _________________________________________________________________ Win a $40K private Lear Jet experience with Flight Sim X! http://ninemsn.com.au/share/redir/adTrack.asp?mode=click & clientID=730 & referral=h\ otmailtagline & URL=http://games.ninemsn.com.au Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 - You're going to feel right at home really soon here! Congratulations on lil' Jack's birth. I know it's been a whirlwind since he arrived, but I promise things will slow down eventually. My daughter is nearly 9 yrs. She didn't have choanal atresia, TEF, or Esophageal atresia so was not in the hospital as long as Jack. She did get a Gtube at a few months of age. We tried an NGtube for months hoping she'd learn to take a bottle. The Gtube is not difficult and you will find it a blessing. Jack will get the nutrition he needs - and you have an easy-in for meds. You can continue with feeding and oral motor therapy as he is able. The Gtube is reversible so it can come out when Jack no longer needs it. That could be in 1 year, many years, or never. Depends on Jack. But know that you will manage it just fine and it isn't necessarily permanent. It's a wonderful tool for him right now and as long as he needs it. The folks who still have tubes (Aubrie got hers out at 1.5 yrs) will have lots of advice in caring for it, managing feedings, etc. I'm sure you'll get some general advice to start, but be sure to ask even the silliest things as times goes on. With as many people as we have on the list, surely someone will have an answer. Welcome! Michele W mom to Aubrie almost 9 yrs CHaRgE and 15 yrs, wife to DJ, in IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 , First of all, welcome to the list and congratulations on the birth of Jack! Regarding the g-tube, I know it seems scary at first, but you will be a pro in no time. Tube feeding will be like second nature to you, although I'm sure it doesn't seem like right now. Kennedy has had hers for eight years and we've been able to make sure she's always had a super healthy diet that met all of her nutritional needs; it took the stress of worrying about weight gain, etc when she was a baby. She will learn to eat more when she is ready (right now, just soft puddings/yogurts, etc). They'll probably start him off on a continuous feed (with a pump) and then move toward bolus feedings (more at one time, like a " meal " ) gradually. If you think of more specific questions as things get closer or afterward, feel free to send them along. The fundoplication was a lifesaver for Kennedy - she had severe reflux, her quality of life improved dramatically after that surgery and it's still intact since July of 1998! Hope to hear more about Jack - is he your first child? Also, if you'd like to email me a photo of Jack, I can add him to our CHARGE Picture Page at http://www.imagestation.com/album/?id=2117043995. My email is kawfolks@... www.chargesyndrome.info > > I've never joined a group like this before, so I'm not really sure > how it works. I guess I'll start by telling you a little about my > son. > > Jack was just diagnosed with CHARGE syndrome about 3 weeks ago. He > was born with a TE Fistula and and Esophogeal Atresia which was > repaired at 4 days old. He was rushed to a NICU an hour and a half > away. Then they found the AVSD. He has been in the NICU for two > months now and they have slowly uncovered the aspects of CHARGE. He > had bilateral Choanal atresia, which explained why he failed > extubation 3 times, Coloboma fo the retina in both eyes, micropenis, > and as far as we know just extenal ear malformations, however, they > have not checked his hearing yet. On Friday they are going to do a > fundoplication and insertion of a g-tube then on Monday he's having > his second Choanal atresia surgery. > > I'm pretty nervous about the G-tube. I know they'll teach me > everything I need to know but there are little things that the > doctors may not tell me. I would really like some advice about the > tube. > > I know that we are all going through the same things and it is > comforting to know that I am not alone. Thank you for that! > > , mom of Jack (2 months) > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 Hi, my name is and I have a 18 month old charger named Alissa. When it comes to the G-tube, I was soo afraid. I was in a little denial and I just did not want the foreign tube in her. I wanted her to eat by mouth and thats it! but... things didn't go my way and I soon realized that it really didn't matter how the food gets in her but just as long as she' fed, she's not hungry, she's safe, and she' thriving. It'll all come together day but for now, that g-tube is my best friend. It's very easy to take care of. You won't even remember it s there. She doesnt feel a thing either. Best of luck. > > I've never joined a group like this before, so I'm not really sure > how it works. I guess I'll start by telling you a little about my > son. > > Jack was just diagnosed with CHARGE syndrome about 3 weeks ago. He > was born with a TE Fistula and and Esophogeal Atresia which was > repaired at 4 days old. He was rushed to a NICU an hour and a half > away. Then they found the AVSD. He has been in the NICU for two > months now and they have slowly uncovered the aspects of CHARGE. He > had bilateral Choanal atresia, which explained why he failed > extubation 3 times, Coloboma fo the retina in both eyes, micropenis, > and as far as we know just extenal ear malformations, however, they > have not checked his hearing yet. On Friday they are going to do a > fundoplication and insertion of a g-tube then on Monday he's having > his second Choanal atresia surgery. > > I'm pretty nervous about the G-tube. I know they'll teach me > everything I need to know but there are little things that the > doctors may not tell me. I would really like some advice about the > tube. > > I know that we are all going through the same things and it is > comforting to know that I am not alone. Thank you for that! > > , mom of Jack (2 months) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 Hi , Welcome to the group. I don't have any experience with a TE fistula or with choanal atresia. My son had a Nissen and g-tube surgery when he was 9 weeks old (he is 16 months old now). Opinions on the Nissen are pretty polarized--for us, this surgery was a huge quality of life improvement for my son (he was constantly throwing-up and not gaining weight well); other families have had less positive experiences with the surgery. But I think almost all parents are glad they had g-tubes put in. For one, it eliminates the constant battle with OG/NG tubes staying in. It's very easy to give your child medications. And after the initial healing time, they are really easy to care for. As for the Drs. and nurses not telling you everything...that is very true! One thing that was very underemphasized at our hospital was venting--as in you need to do it, and sometimes pretty often. We were under the impression it was something that only needed to be done at those " rare " times when a child would be vomiting if not for the nissen, and that it would be " obvious " that is what needed to be done. Our son's Nissen is tight enough that we usually vent him at least after every meal to release gas pressure (he can't burp). And poor Evan, he endured a good 4-6 weeks of us rocking him or giving him tylenol every night because we thought he had colic before another parent (of an older child with a g-tube) asked if whe had tried venting him. So my advice: vent often Also, make sure you have good instruction on what to do if the tube gets pulled out (and that they send you with a good supply of temporary catheters of various sizes). Evan was kind enough to do this the first time while we were still in the hospital, so we had nurses to deal with it and he got his permanant tube (a MIC-key button) sooner than he would have otherwise. Finally (this is not g-tube related), you might want to ask about the possibility of getting a BAER hearing test under anesthesia, combined with one of his other procedures. It took us a year to get Evan's hearing aides, and we started trying to get BAERs while he was sleeping by 2 months. Evan's ear canals were so small and malformed that it was really hard to get any consistent data, and he would always wake up midway through the tests. We finally had a BAER done under anesthesia right before his 1st birthday, and hearing aides 3 weeks after that--I don't know why I didn't push for that sooner. It's better to try and limit the number of general anesthesias your child goes through, so I'm always looking ahead to see what tests and procedures can be combined to make the most of each time. I hope that Jack's two surgeries are successful and he has a speedy recovery. (mom to Evan, 16 months, ChaRGE) www.babysites.com/sites/skeybunny username evandavid password pookie waggoner529 wrote: I've never joined a group like this before, so I'm not really sure how it works. I guess I'll start by telling you a little about my son. Jack was just diagnosed with CHARGE syndrome about 3 weeks ago. He was born with a TE Fistula and and Esophogeal Atresia which was repaired at 4 days old. He was rushed to a NICU an hour and a half away. Then they found the AVSD. He has been in the NICU for two months now and they have slowly uncovered the aspects of CHARGE. He had bilateral Choanal atresia, which explained why he failed extubation 3 times, Coloboma fo the retina in both eyes, micropenis, and as far as we know just extenal ear malformations, however, they have not checked his hearing yet. On Friday they are going to do a fundoplication and insertion of a g-tube then on Monday he's having his second Choanal atresia surgery. I'm pretty nervous about the G-tube. I know they'll teach me everything I need to know but there are little things that the doctors may not tell me. I would really like some advice about the tube. I know that we are all going through the same things and it is comforting to know that I am not alone. Thank you for that! , mom of Jack (2 months) --------------------------------- Sponsored Link Want a degree but can't afford to quit? Online degrees from top schools - in as fast as 1 year Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 sarah i must of mixed evan with eva for a sec coz thought he did have conal artresia its the similar names and their cute faces that did ti to me LOL love u > > Hi , > > Welcome to the group. I don't have any experience with a TE fistula or > with choanal atresia. My son had a Nissen and g-tube surgery when he was 9 > weeks old (he is 16 months old now). Opinions on the Nissen are pretty > polarized--for us, this surgery was a huge quality of life improvement for > my son (he was constantly throwing-up and not gaining weight well); other > families have had less positive experiences with the surgery. But I think > almost all parents are glad they had g-tubes put in. For one, it eliminates > the constant battle with OG/NG tubes staying in. It's very easy to give your > child medications. And after the initial healing time, they are really easy > to care for. > > As for the Drs. and nurses not telling you everything...that is very true! > One thing that was very underemphasized at our hospital was venting--as in > you need to do it, and sometimes pretty often. We were under the impression > it was something that only needed to be done at those " rare " times when a > child would be vomiting if not for the nissen, and that it would be > " obvious " that is what needed to be done. Our son's Nissen is tight enough > that we usually vent him at least after every meal to release gas pressure > (he can't burp). And poor Evan, he endured a good 4-6 weeks of us rocking > him or giving him tylenol every night because we thought he had colic before > another parent (of an older child with a g-tube) asked if whe had tried > venting him. So my advice: vent often > > Also, make sure you have good instruction on what to do if the tube gets > pulled out (and that they send you with a good supply of temporary catheters > of various sizes). Evan was kind enough to do this the first time while we > were still in the hospital, so we had nurses to deal with it and he got his > permanant tube (a MIC-key button) sooner than he would have otherwise. > > Finally (this is not g-tube related), you might want to ask about the > possibility of getting a BAER hearing test under anesthesia, combined with > one of his other procedures. It took us a year to get Evan's hearing aides, > and we started trying to get BAERs while he was sleeping by 2 months. Evan's > ear canals were so small and malformed that it was really hard to get any > consistent data, and he would always wake up midway through the tests. We > finally had a BAER done under anesthesia right before his 1st birthday, and > hearing aides 3 weeks after that--I don't know why I didn't push for that > sooner. It's better to try and limit the number of general anesthesias your > child goes through, so I'm always looking ahead to see what tests and > procedures can be combined to make the most of each time. > > I hope that Jack's two surgeries are successful and he has a speedy > recovery. > > (mom to Evan, 16 months, ChaRGE) > www.babysites.com/sites/skeybunny > username evandavid password pookie > > > > waggoner529 <waggoner529@... <waggoner529%40yahoo.com>> wrote: > I've never joined a group like this before, so I'm not really sure > how it works. I guess I'll start by telling you a little about my > son. > > Jack was just diagnosed with CHARGE syndrome about 3 weeks ago. He > was born with a TE Fistula and and Esophogeal Atresia which was > repaired at 4 days old. He was rushed to a NICU an hour and a half > away. Then they found the AVSD. He has been in the NICU for two > months now and they have slowly uncovered the aspects of CHARGE. He > had bilateral Choanal atresia, which explained why he failed > extubation 3 times, Coloboma fo the retina in both eyes, micropenis, > and as far as we know just extenal ear malformations, however, they > have not checked his hearing yet. On Friday they are going to do a > fundoplication and insertion of a g-tube then on Monday he's having > his second Choanal atresia surgery. > > I'm pretty nervous about the G-tube. I know they'll teach me > everything I need to know but there are little things that the > doctors may not tell me. I would really like some advice about the > tube. > > I know that we are all going through the same things and it is > comforting to know that I am not alone. Thank you for that! > > , mom of Jack (2 months) > > --------------------------------- > Sponsored Link > > Want a degree but can't afford to quit? Online degrees from top schools - > in as fast as 1 year > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2006 Report Share Posted November 22, 2006 welcome to our home we call chargeland LOL im a 21 year old charger tube feeds arent that bad ive got celf lip palate reflux hearing probs vision probs and much more sutff im in aus where bouts r u there should b soem families near you you can meet up wit have yuo read the manual www.chargesyndrome.org and it is available online there to ther is a confrence in march next year not taht far away you know!!!!!!!!!111 just foru months god this is a great place love ellen > > sarah i must of mixed evan with eva for a sec coz thought he did have > conal artresia its the similar names and their cute faces that did ti to me > LOL love u > > > > > > Hi , > > > > Welcome to the group. I don't have any experience with a TE fistula or > > with choanal atresia. My son had a Nissen and g-tube surgery when he was 9 > > weeks old (he is 16 months old now). Opinions on the Nissen are pretty > > polarized--for us, this surgery was a huge quality of life improvement for > > my son (he was constantly throwing-up and not gaining weight well); other > > families have had less positive experiences with the surgery. But I think > > almost all parents are glad they had g-tubes put in. For one, it eliminates > > the constant battle with OG/NG tubes staying in. It's very easy to give your > > child medications. And after the initial healing time, they are really easy > > to care for. > > > > As for the Drs. and nurses not telling you everything...that is very > > true! One thing that was very underemphasized at our hospital was > > venting--as in you need to do it, and sometimes pretty often. We were under > > the impression it was something that only needed to be done at those " rare " > > times when a child would be vomiting if not for the nissen, and that it > > would be " obvious " that is what needed to be done. Our son's Nissen is tight > > enough that we usually vent him at least after every meal to release gas > > pressure (he can't burp). And poor Evan, he endured a good 4-6 weeks of us > > rocking him or giving him tylenol every night because we thought he had > > colic before another parent (of an older child with a g-tube) asked if whe > > had tried venting him. So my advice: vent often > > > > Also, make sure you have good instruction on what to do if the tube gets > > pulled out (and that they send you with a good supply of temporary catheters > > of various sizes). Evan was kind enough to do this the first time while we > > were still in the hospital, so we had nurses to deal with it and he got his > > permanant tube (a MIC-key button) sooner than he would have otherwise. > > > > Finally (this is not g-tube related), you might want to ask about the > > possibility of getting a BAER hearing test under anesthesia, combined with > > one of his other procedures. It took us a year to get Evan's hearing aides, > > and we started trying to get BAERs while he was sleeping by 2 months. Evan's > > ear canals were so small and malformed that it was really hard to get any > > consistent data, and he would always wake up midway through the tests. We > > finally had a BAER done under anesthesia right before his 1st birthday, and > > hearing aides 3 weeks after that--I don't know why I didn't push for that > > sooner. It's better to try and limit the number of general anesthesias your > > child goes through, so I'm always looking ahead to see what tests and > > procedures can be combined to make the most of each time. > > > > I hope that Jack's two surgeries are successful and he has a speedy > > recovery. > > > > (mom to Evan, 16 months, ChaRGE) > > www.babysites.com/sites/skeybunny > > username evandavid password pookie > > > > > > > > waggoner529 <waggoner529@... <waggoner529%40yahoo.com> > wrote: > > I've never joined a group like this before, so I'm not really sure > > how it works. I guess I'll start by telling you a little about my > > son. > > > > Jack was just diagnosed with CHARGE syndrome about 3 weeks ago. He > > was born with a TE Fistula and and Esophogeal Atresia which was > > repaired at 4 days old. He was rushed to a NICU an hour and a half > > away. Then they found the AVSD. He has been in the NICU for two > > months now and they have slowly uncovered the aspects of CHARGE. He > > had bilateral Choanal atresia, which explained why he failed > > extubation 3 times, Coloboma fo the retina in both eyes, micropenis, > > and as far as we know just extenal ear malformations, however, they > > have not checked his hearing yet. On Friday they are going to do a > > fundoplication and insertion of a g-tube then on Monday he's having > > his second Choanal atresia surgery. > > > > I'm pretty nervous about the G-tube. I know they'll teach me > > everything I need to know but there are little things that the > > doctors may not tell me. I would really like some advice about the > > tube. > > > > I know that we are all going through the same things and it is > > comforting to know that I am not alone. Thank you for that! > > > > , mom of Jack (2 months) > > > > --------------------------------- > > Sponsored Link > > > > Want a degree but can't afford to quit? Online degrees from top schools > > - in as fast as 1 year > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2006 Report Share Posted November 23, 2006 Hi , Welcome to the list! I have an 8 month son Felix with charge. He had the TEF EA repaired at 1 day old, coloboma, hearing loss, ASDs and valve problem, micropenis, undescended testes, etc. He did not have the choanal atresia. Also our docs did not do a fundoplication on him - they were concerned about it comprimising the surgery site from the TEF EA repair. You might want to talk to them about this, as I understand it fundolplications don't always work/work well. Felix received three rounds of testosterone shots for the micropenis and it is now normal-sized. He has a G-J tube. Does Jack have reflux? Usually kids with TEF EA repair end up with reflux. Our surgeons put the feeding tube in the stomach but also into his jejunum to reduce the chance for reflux. So all of his food and meds bypass the stomach and go directly into his intestines. This has worked really well for us. He has thrived (he's 20 pounds at 8 months) and has minimal reflux. I was also nervous about the tube but it really is nothing. It doesn't bother the kids and there are some benefits - Felix has slept through the night since he got his! I know this is a very difficult time for you now, we were in the NICU for 3 1/2 months and I thought my life was over, but it does get better. Take comfort in knowing that Jack will get better and you will have him home and settle into a routine with him and things will feel " normal " again. All the best to you and Jack, Mom to Felix 8 month old charger and Max 2 1/2 years old > > I've never joined a group like this before, so I'm not really sure > how it works. I guess I'll start by telling you a little about my > son. > > Jack was just diagnosed with CHARGE syndrome about 3 weeks ago. He > was born with a TE Fistula and and Esophogeal Atresia which was > repaired at 4 days old. He was rushed to a NICU an hour and a half > away. Then they found the AVSD. He has been in the NICU for two > months now and they have slowly uncovered the aspects of CHARGE. He > had bilateral Choanal atresia, which explained why he failed > extubation 3 times, Coloboma fo the retina in both eyes, micropenis, > and as far as we know just extenal ear malformations, however, they > have not checked his hearing yet. On Friday they are going to do a > fundoplication and insertion of a g-tube then on Monday he's having > his second Choanal atresia surgery. > > I'm pretty nervous about the G-tube. I know they'll teach me > everything I need to know but there are little things that the > doctors may not tell me. I would really like some advice about the > tube. > > I know that we are all going through the same things and it is > comforting to know that I am not alone. Thank you for that! > > , mom of Jack (2 months) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2006 Report Share Posted November 23, 2006 Hi , Welcome to the list! I have an 8 month son Felix with charge. He had the TEF EA repaired at 1 day old, coloboma, hearing loss, ASDs and valve problem, micropenis, undescended testes, etc. He did not have the choanal atresia. Also our docs did not do a fundoplication on him - they were concerned about it comprimising the surgery site from the TEF EA repair. You might want to talk to them about this, as I understand it fundolplications don't always work/work well. Felix received three rounds of testosterone shots for the micropenis and it is now normal-sized. He has a G-J tube. Does Jack have reflux? Usually kids with TEF EA repair end up with reflux. Our surgeons put the feeding tube in the stomach but also into his jejunum to reduce the chance for reflux. So all of his food and meds bypass the stomach and go directly into his intestines. This has worked really well for us. He has thrived (he's 20 pounds at 8 months) and has minimal reflux. I was also nervous about the tube but it really is nothing. It doesn't bother the kids and there are some benefits - Felix has slept through the night since he got his! I know this is a very difficult time for you now, we were in the NICU for 3 1/2 months and I thought my life was over, but it does get better. Take comfort in knowing that Jack will get better and you will have him home and settle into a routine with him and things will feel " normal " again. All the best to you and Jack, Mom to Felix 8 month old charger and Max 2 1/2 years old > > I've never joined a group like this before, so I'm not really sure > how it works. I guess I'll start by telling you a little about my > son. > > Jack was just diagnosed with CHARGE syndrome about 3 weeks ago. He > was born with a TE Fistula and and Esophogeal Atresia which was > repaired at 4 days old. He was rushed to a NICU an hour and a half > away. Then they found the AVSD. He has been in the NICU for two > months now and they have slowly uncovered the aspects of CHARGE. He > had bilateral Choanal atresia, which explained why he failed > extubation 3 times, Coloboma fo the retina in both eyes, micropenis, > and as far as we know just extenal ear malformations, however, they > have not checked his hearing yet. On Friday they are going to do a > fundoplication and insertion of a g-tube then on Monday he's having > his second Choanal atresia surgery. > > I'm pretty nervous about the G-tube. I know they'll teach me > everything I need to know but there are little things that the > doctors may not tell me. I would really like some advice about the > tube. > > I know that we are all going through the same things and it is > comforting to know that I am not alone. Thank you for that! > > , mom of Jack (2 months) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2006 Report Share Posted November 23, 2006 kirsten u r right not all work well but i say half do half dotn just soem news for any new parents outthere i didnt work with it but we shouldtn dwell on that LOL > > Hi , > > Welcome to the list! I have an 8 month son Felix with charge. He had > the TEF EA repaired at 1 day old, coloboma, hearing loss, ASDs and > valve problem, micropenis, undescended testes, etc. He did not have > the choanal atresia. Also our docs did not do a fundoplication on > him - they were concerned about it comprimising the surgery site > from the TEF EA repair. You might want to talk to them about this, > as I understand it fundolplications don't always work/work well. > Felix received three rounds of testosterone shots for the micropenis > and it is now normal-sized. He has a G-J tube. Does Jack have > reflux? Usually kids with TEF EA repair end up with reflux. Our > surgeons put the feeding tube in the stomach but also into his > jejunum to reduce the chance for reflux. So all of his food and meds > bypass the stomach and go directly into his intestines. This has > worked really well for us. He has thrived (he's 20 pounds at 8 > months) and has minimal reflux. I was also nervous about the tube > but it really is nothing. It doesn't bother the kids and there are > some benefits - Felix has slept through the night since he got his! > I know this is a very difficult time for you now, we were in the > NICU for 3 1/2 months and I thought my life was over, but it does > get better. Take comfort in knowing that Jack will get better and > you will have him home and settle into a routine with him and things > will feel " normal " again. > > All the best to you and Jack, > > > Mom to Felix 8 month old charger and Max 2 1/2 years old > > > > > > I've never joined a group like this before, so I'm not really sure > > how it works. I guess I'll start by telling you a little about my > > son. > > > > Jack was just diagnosed with CHARGE syndrome about 3 weeks ago. > He > > was born with a TE Fistula and and Esophogeal Atresia which was > > repaired at 4 days old. He was rushed to a NICU an hour and a > half > > away. Then they found the AVSD. He has been in the NICU for two > > months now and they have slowly uncovered the aspects of CHARGE. > He > > had bilateral Choanal atresia, which explained why he failed > > extubation 3 times, Coloboma fo the retina in both eyes, > micropenis, > > and as far as we know just extenal ear malformations, however, > they > > have not checked his hearing yet. On Friday they are going to do > a > > fundoplication and insertion of a g-tube then on Monday he's > having > > his second Choanal atresia surgery. > > > > I'm pretty nervous about the G-tube. I know they'll teach me > > everything I need to know but there are little things that the > > doctors may not tell me. I would really like some advice about > the > > tube. > > > > I know that we are all going through the same things and it is > > comforting to know that I am not alone. Thank you for that! > > > > , mom of Jack (2 months) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2006 Report Share Posted November 26, 2006 hi every one i have never joind a group like this before my grandaughter is 1 and has a gastric tube colonboma of the retner not sure about hearing yet she has advs no cleft she looks like a noral baby does not sit up prperly yet but rolls all over she does not eat oraly she is hospital at we speek has bad reflux awaiting surgery what do you meenm by venty your child never heard of that before love to talk to you i live in uk > > > > > > > > > waggoner529 <waggoner529@... <waggoner529%40yahoo.com> > wrote: > > > I've never joined a group like this before, so I'm not really sure > > > how it works. I guess I'll start by telling you a little about my > > > son. > > > > > > Jack was just diagnosed with CHARGE syndrome about 3 weeks ago. He > > > was born with a TE Fistula and and Esophogeal Atresia which was > > > repaired at 4 days old. He was rushed to a NICU an hour > > > extubation 3 times, Coloboma fo the retina in both eyes, micropenis, > > > and as far as we know just extenal ear malformations, however, they > > > have not checked his hearing yet. On Friday they are going to do a > > > fundoplication and insertion of a g-tube then on Monday he's having > > > his second Choanal atresia surgery. > > > > > > I'm pretty nervous about the G-tube. I know they'll teach me > > > everything I need to know but there are little things that the > > > doctors may not tell me. I would really like some advice about the > > > tube. > > > > > > I know that we are all going through the same things and it is > > > comforting to know that I am not alone. Thank you for that! > > > > > > , mom of Jack (2 months) > > > > > > --------------------------------- > > > Sponsored Link > > > > > > Want a degree but can't afford to quit? Online degrees from top schools > > > - in as fast as 1 year > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2006 Report Share Posted November 26, 2006 Dear Ladies, I am reading your notes and remembering what we have been through with our son who is now a relatively healthy 16 year old with CHARGE. But I assure you that the g-tube is very easy and the nurses will teach you. You will be a pro at it and your children will be fine and will thrive with the right formulas. Also, the fundoplication will be great because your child will not vomit anymore and will feel so much better. It will be a good thing for all and necessary. I know these are hard times but they will get better. Sometimes it will get bad again but you wil remain strong for your child and you will do what has to be done. I was just talking to some colleagues at work about what our family and our son (and our daughter who does not have CHARGE) has been through and it was like a dream but we have made it and will make it. You will, too. I am telling you, We have been through all of this in our past and we are alive and thriving and living our lives and loving eachother. Surround yourself with those who can help you and that love you and your child. Take time for yourself and keep yourself strong. You can get sick, too, from this stress. Always remember you are your child's eyes and ears to the world now and you are your child's advocate until they can do so for themselves. Take care and have the knowledge that others have been in your boat. ck > >Reply-To: CHARGE >To: CHARGE >Subject: Re: New Charge Mom >Date: Sun, 26 Nov 2006 14:01:27 -0000 > >hi every one i have never joind a group like this before my >grandaughter is 1 and has a gastric tube colonboma of the retner not >sure about hearing yet she has advs no cleft she looks like a noral >baby does not sit up prperly yet but rolls all over she does not eat >oraly she is hospital at we speek has bad reflux awaiting surgery >what do you meenm by venty your child never heard of that before >love to talk to you i live in uk > > > > > > > > > > > > waggoner529 <waggoner529@... <waggoner529%40yahoo.com> > wrote: > > > > I've never joined a group like this before, so I'm not really >sure > > > > how it works. I guess I'll start by telling you a little about >my > > > > son. > > > > > > > > Jack was just diagnosed with CHARGE syndrome about 3 weeks >ago. He > > > > was born with a TE Fistula and and Esophogeal Atresia which was > > > > repaired at 4 days old. He was rushed to a NICU an hour > > > > extubation 3 times, Coloboma fo the retina in both eyes, >micropenis, > > > > and as far as we know just extenal ear malformations, however, >they > > > > have not checked his hearing yet. On Friday they are going to >do a > > > > fundoplication and insertion of a g-tube then on Monday he's >having > > > > his second Choanal atresia surgery. > > > > > > > > I'm pretty nervous about the G-tube. I know they'll teach me > > > > everything I need to know but there are little things that the > > > > doctors may not tell me. I would really like some advice about >the > > > > tube. > > > > > > > > I know that we are all going through the same things and it is > > > > comforting to know that I am not alone. Thank you for that! > > > > > > > > , mom of Jack (2 months) > > > > > > > > --------------------------------- > > > > Sponsored Link > > > > > > > > Want a degree but can't afford to quit? Online degrees from >top schools > > > > - in as fast as 1 year > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2006 Report Share Posted November 26, 2006 Welcome to the listserv and congratulations on your new baby grand daughter. Can't wait to hear more about her, what's her name? www.chargesyndrome.info > > hi every one i have never joind a group like this before my > grandaughter is 1 and has a gastric tube colonboma of the retner not > sure about hearing yet she has advs no cleft she looks like a noral > baby does not sit up prperly yet but rolls all over she does not eat > oraly she is hospital at we speek has bad reflux awaiting surgery > what do you meenm by venty your child never heard of that before > love to talk to you i live in uk > > > > > > > > > > > > waggoner529 <waggoner529@... <waggoner529%40yahoo.com> > wrote: > > > > I've never joined a group like this before, so I'm not really > sure > > > > how it works. I guess I'll start by telling you a little about > my > > > > son. > > > > > > > > Jack was just diagnosed with CHARGE syndrome about 3 weeks > ago. He > > > > was born with a TE Fistula and and Esophogeal Atresia which was > > > > repaired at 4 days old. He was rushed to a NICU an hour > > > > extubation 3 times, Coloboma fo the retina in both eyes, > micropenis, > > > > and as far as we know just extenal ear malformations, however, > they > > > > have not checked his hearing yet. On Friday they are going to > do a > > > > fundoplication and insertion of a g-tube then on Monday he's > having > > > > his second Choanal atresia surgery. > > > > > > > > I'm pretty nervous about the G-tube. I know they'll teach me > > > > everything I need to know but there are little things that the > > > > doctors may not tell me. I would really like some advice about > the > > > > tube. > > > > > > > > I know that we are all going through the same things and it is > > > > comforting to know that I am not alone. Thank you for that! > > > > > > > > , mom of Jack (2 months) > > > > > > > > --------------------------------- > > > > Sponsored Link > > > > > > > > Want a degree but can't afford to quit? Online degrees from > top schools > > > > - in as fast as 1 year > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2006 Report Share Posted November 26, 2006 Hi ! I was concerned about the TEF repair with the fundoplication but the sugeon who did the fundo also did the TEF repair and he said the repair was high enough and he had enough stomach that it wasn't a concern. Jack did have terrible reflux. He wasn't ever able to achieve full feedings. I am hopeful that the fundo will help with that. I was, however, really suprised by the amount of pain Jack has been in the past few days with the g-tube. He has had multiple large doses of morphine but it doesn't seem to help. Did Felix have the same problem when he got his? I just wish they would have prepared me a little more for that. Anyway, I have heard that babies do sllep through the night with a g-tube, and, i'm glad I won't have to worry about getting him to take his medicine! I really hope that Jack is one of those babies! They've said he may come home in a few weeks so I'm very thankful for that! It is so nice to have met you. It is wonderful to know there are other parents out there that have been through the same things I'm going through now. well, I hope you have a great night! ~ Mom of Jack, 2mo kzkoehler wrote: Hi , Welcome to the list! I have an 8 month son Felix with charge. He had the TEF EA repaired at 1 day old, coloboma, hearing loss, ASDs and valve problem, micropenis, undescended testes, etc. He did not have the choanal atresia. Also our docs did not do a fundoplication on him - they were concerned about it comprimising the surgery site from the TEF EA repair. You might want to talk to them about this, as I understand it fundolplications don't always work/work well. Felix received three rounds of testosterone shots for the micropenis and it is now normal-sized. He has a G-J tube. Does Jack have reflux? Usually kids with TEF EA repair end up with reflux. Our surgeons put the feeding tube in the stomach but also into his jejunum to reduce the chance for reflux. So all of his food and meds bypass the stomach and go directly into his intestines. This has worked really well for us. He has thrived (he's 20 pounds at 8 months) and has minimal reflux. I was also nervous about the tube but it really is nothing. It doesn't bother the kids and there are some benefits - Felix has slept through the night since he got his! I know this is a very difficult time for you now, we were in the NICU for 3 1/2 months and I thought my life was over, but it does get better. Take comfort in knowing that Jack will get better and you will have him home and settle into a routine with him and things will feel " normal " again. All the best to you and Jack, Mom to Felix 8 month old charger and Max 2 1/2 years old > > I've never joined a group like this before, so I'm not really sure > how it works. I guess I'll start by telling you a little about my > son. > > Jack was just diagnosed with CHARGE syndrome about 3 weeks ago. He > was born with a TE Fistula and and Esophogeal Atresia which was > repaired at 4 days old. He was rushed to a NICU an hour and a half > away. Then they found the AVSD. He has been in the NICU for two > months now and they have slowly uncovered the aspects of CHARGE. He > had bilateral Choanal atresia, which explained why he failed > extubation 3 times, Coloboma fo the retina in both eyes, micropenis, > and as far as we know just extenal ear malformations, however, they > have not checked his hearing yet. On Friday they are going to do a > fundoplication and insertion of a g-tube then on Monday he's having > his second Choanal atresia surgery. > > I'm pretty nervous about the G-tube. I know they'll teach me > everything I need to know but there are little things that the > doctors may not tell me. I would really like some advice about the > tube. > > I know that we are all going through the same things and it is > comforting to know that I am not alone. Thank you for that! > > , mom of Jack (2 months) > --------------------------------- Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2006 Report Share Posted November 27, 2006 Hi , I'm trying to think back to that particular surgery - I know they used to put Felix on morphine as well as atavan and sometimes also Tylenol. I know they kept him pretty sedated for the first few days after his surgeries so I don't remember that he was in a lot of pain. I do know after a while (the G-J tube was his 3rd surgery) the morphine didn't really help him. The nurses would say " he laughs at it " . At Children's in Boston they seemed to be pretty good about pain management and always asked me if I thought he was uncomfortable and gave us options (the atavan, the tylenol, etc) to try on top of the morphine if he didn't settle. I think the fundo is a bigger operation than just the G-tube so maybe our experience is not the same, but you might want to ask the nurses if they can give him something else. Tylenol actually seemed to help Felix believe it or not. I hope that Jack recuperates from the surgery quickly and that you get to take him home very soon! Take care, > > > > I've never joined a group like this before, so I'm not really sure > > how it works. I guess I'll start by telling you a little about my > > son. > > > > Jack was just diagnosed with CHARGE syndrome about 3 weeks ago. > He > > was born with a TE Fistula and and Esophogeal Atresia which was > > repaired at 4 days old. He was rushed to a NICU an hour and a > half > > away. Then they found the AVSD. He has been in the NICU for two > > months now and they have slowly uncovered the aspects of CHARGE. > He > > had bilateral Choanal atresia, which explained why he failed > > extubation 3 times, Coloboma fo the retina in both eyes, > micropenis, > > and as far as we know just extenal ear malformations, however, > they > > have not checked his hearing yet. On Friday they are going to do > a > > fundoplication and insertion of a g-tube then on Monday he's > having > > his second Choanal atresia surgery. > > > > I'm pretty nervous about the G-tube. I know they'll teach me > > everything I need to know but there are little things that the > > doctors may not tell me. I would really like some advice about > the > > tube. > > > > I know that we are all going through the same things and it is > > comforting to know that I am not alone. Thank you for that! > > > > , mom of Jack (2 months) > > > > > > > > > --------------------------------- > Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2006 Report Share Posted November 27, 2006 Hi We live in the UK Manchester our fourth daughter has charge she called Amelie and is 23 months old, and there is also a support group in the Uk, and some Uk parents on here if it helps, but this is the listserv I use I like the varied cultures and countries and lots of ideas all mixed in the pot I usually get all my answers worked out one way or the other!!!! Lesley. > Hi , > > I'm trying to think back to that particular surgery - I know they > used to put Felix on morphine as well as atavan and sometimes also > Tylenol. I know they kept him pretty sedated for the first few days > after his surgeries so I don't remember that he was in a lot of > pain. I do know after a while (the G-J tube was his 3rd surgery) the > morphine didn't really help him. The nurses would say " he laughs at > it " . At Children's in Boston they seemed to be pretty good about > pain management and always asked me if I thought he was > uncomfortable and gave us options (the atavan, the tylenol, etc) to > try on top of the morphine if he didn't settle. I think the fundo is > a bigger operation than just the G-tube so maybe our experience is > not the same, but you might want to ask the nurses if they can give > him something else. Tylenol actually seemed to help Felix believe it > or not. > > I hope that Jack recuperates from the surgery quickly and that you > get to take him home very soon! > > Take care, > > > > > > > > > I've never joined a group like this before, so I'm not really > sure > > > how it works. I guess I'll start by telling you a little > about my > > > son. > > > > > > Jack was just diagnosed with CHARGE syndrome about 3 weeks > ago. > > He > > > was born with a TE Fistula and and Esophogeal Atresia which > was > > > repaired at 4 days old. He was rushed to a NICU an hour and a > > half > > > away. Then they found the AVSD. He has been in the NICU for > two > > > months now and they have slowly uncovered the aspects of > CHARGE. > > He > > > had bilateral Choanal atresia, which explained why he failed > > > extubation 3 times, Coloboma fo the retina in both eyes, > > micropenis, > > > and as far as we know just extenal ear malformations, however, > > they > > > have not checked his hearing yet. On Friday they are going to > do > > a > > > fundoplication and insertion of a g-tube then on Monday he's > > having > > > his second Choanal atresia surgery. > > > > > > I'm pretty nervous about the G-tube. I know they'll teach me > > > everything I need to know but there are little things that the > > > doctors may not tell me. I would really like some advice > about > > the > > > tube. > > > > > > I know that we are all going through the same things and it is > > > comforting to know that I am not alone. Thank you for that! > > > > > > , mom of Jack (2 months) > > > > > > > > > > > > > > > > > --------------------------------- > > Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call > rates. > > > > Quote Link to comment Share on other sites More sharing options...
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