T E Fistula

Vicki,

What a weekend I've had!

On Friday, (I had already given up on my surgeon and scheduled an appointment with a different ped. surgeon in the new hospital) when my surgeon called and asked me what's doing. When I complained to him that I'd have to wait until March most probably for the endoscopy he said that if I'd like, he will get me in this week in the original hospital. (I guess either he's not so happy that I'd switched hospitals or he was trying to be nice.) All weekend long I agonized over the decision but in the end I've decided, (with the help of the most AMAZING individual who is extremely knowledgeable in the medical field and knows many many top doctors and refers patients to the doctors best for them) that I will stick with the new hospital because the GI there is much better. I'm disappointed that I'll have to wait but in the long run I know he's better off. The down side is, he is not eating any food (he probably could but I'm afraid to be blamed if I go against doctors' advise) and I rarely keep him on the floor because he always manages to find things to put into his mouth even when the floor is spotless (which is quite difficult when his siblings are around). He is however eating baby jars and yogurt etc. and has gotten used to it though, I wish I could give him real food again.

You said that you are taking Ansley back to the NICU for a developmental test to see if she needs therapy. How interesting. They insisted I do that when my son was a tiny baby. Being that he had been laying in the NICU they said he'd surly benefit from therapy. He currently has PT and OT once a week and he just started speech (I wanted it to help strengthen his vocal cord) 3 times a week. I strongly believe that it can only help all kids. He may have developed just as well without but therapy never hurts. Also, for example, his speech therapist reads to him tons and they say this make kids smarter in the long run son why not do it for him if I can? They will very likely recommend therapy for Ansley (around here the state provides it at no cost, I hope it's the same by you), though you should know that even without it she'd really be OK. But if she were my kid, I'd take what I could get - you simply can't go wrong that way.

Let me know what happens and I'm sure, in the end, she will be fine. Try not to worry too much,
Diana

Vicki

I forgot to add that my son is 14 months and his cough never returned. I assume it was some kind of bacterial infection in his trachea - worsened by, I guess, tracheamalacia (which has practically disappeared as far as I can hear), and the antibiotics from the strep must have cured it.

Meanwhile, I just got a call that my surgeon is working on getting me the chief GI in the original hospital for me. Oh, why does this have to be SO confusing? I don't know what to do!

Diana

Diana,

Any word yet? I agree it all sounds very confusing. I can understand you wanting you get your son back to solid foods. Hopefully that is just around the corner! I'm glad to hear that his cough has not returned. Ansley never had that problem, although I've heard that many TEF babies do.
I agree with you about the therapys. If they say she needs it then that is the path we will take. She did get a little physical and speech therapy when she was very small. I have had a lot of people tell me that they get therapy for their children for free so I'm hoping that our state is the same way.
I did get some good news from Ansley's kidney doctor this week. If you recall, she was born with only one kidney and has been on medication 3 times a day almost since birth. Her last blood work looked so good that he decreased her medication to twice a day! Exciting stuff for us! She was also weighed at that doctors appointment and weighed in at 22 pounds. That sounded awfully small for (almost) 2 years old. What do you think?
Keep me posted
Vicki

Vicki,

Sounds great about Ansley's kidney. What do they expect? Will she need to take meds for it always or only while she's young? In either case -I'm so glad to hear that you could cut back on them for now.

As far as her weight being only 22 lbs, that does sound awfully small but from experience, I wouldn't be concerned at all. My 6 yr old was 15 lbs at a year, 18 lbs at a year and a half. I don't recall what she was at 2 but I assure you it was not much more than Ansley but you know what? She's a very healthy, happy smart little cutie. She's still quite small (I think in the low 30 range the last time she was weighed back in Sep.) but neither my husband nor I are small so I believe one day she will just have a growth spurt. The main thing is if they are healthy and developing properly. I spoke recently with a woman (also a TEF mom) and she said that her daughter is 2 and a half and weighs 19lbs but the doctors are not concerned. I think though, if my child were THAT small I might be concerned.

As far as my son, I haven't yet decided which hospital to stick with but I think whichever can schedule me sooner with the doctor of my choice is who I will go with. Meantime my son was crawling one day last week (after I spent lots of time sweeping and vacuuming on my hands and knees just to make sure I didn't miss a crumb) and some how he got a hold of a cucumber peal. (I had peeled a cucumber while he was on the floor.) Well, later that evening, I tried feeding him a baby jar but he kept throwing up. My husband turned him over and started pounding his back and up came the cucumber peel. I'm wondering, a normal child (I think), even if they swallow a large piece, if they could swallow it without choking it would go all the way down. What would happen if Ansley would have swallowed it? It was not such a small piece and it was folded over. Is this a sign that he needs to be dilated or is this just a fact of life for a TEF kid? Well, my husband who is always nervous, said I can NEVER put him on the floor again no matter how clean it is.

The good news is that he's almost walking. Yesterday he took 27 steps in a row! If he'd only be on the floor more I believe he'd be walking and then hopefully not finding everything to put in his mouth.

Well I guess everything will happen in the right time.

Happy Birthday to Ansley and I hope to continue hearing good news about her,

Diana

Diana,

I hope that one day she will not need to take medicine for her kidney. I've asked that question and really not been given a straight answer. We go every three months and get her urine and blood checked so time will tell I suppose.
Thank you for the reassurance about her weight. Her doctors are not concerned about her weight anymore so I don't know why I continue to worry. I think it has been a worry for me for so long now that I have a hard time letting it go! I'm pretty petite and my husband is tall and thin so I shouldn't expect her to be big either I guess.
As for the cucumber peel, I think it would have choked Ansley too. The thing with Ansley though is when she does have something stuck in her esophagus, it's VERY obvious. She starts turning red in the face, whining, and gagging. Does your son do these things? Another thing she does is completely stops eating until she throws it up. If she had something stuck in her esophagus there is no way she would allow you to put more food in her mouth. One thing that we have found that helps when she has something stuck is to give her something to drink through a straw. It seems easier for her to suck the liquid through a straw at that point than through her sippy cup. Is your son drinking through a straw or a sippy yet?
That is wonderful about the walking!! Ansley didn't walk until she was 17 months old. Sounds like he is doing good!!
Keep in touch!
Vicki

Vicki,

Thanks for the info. My son usually has "stuck" symptoms. This time however, I heard him try to cough and I thought maybe there was something there but then he stopped and play happily without any more "stuck" signs for a couple hours. I even nursed him and he was fine with that too. He was very interested in eating and it didn't seem to bother him that it couldn't go down. But usually he makes funny noises when something is stuck and often tries to throw up. As far as your advise with drinking, I have tried so hard to get him to drink from a cup, sippy cup, straw even a bottle but he refuses. This is something I'm trying very hard to work on being that I know how important it is for TEF babies. Honestly though, all my kids are very poor drinkers. They eat a lot and drink very little.

Being that you say that it would have gotten stuck by Ansley also, it really makes me think that he will not need to be dilated. I'm not sure if I'm glad about that or not. In a way, I just wish that they could dilate and solve all these problems. But I guess he will just learn to deal with it as he grows older.

Does it still make you nervous when Ansley gets food "stuck"?

All the best,
Diana

Diana,

Ansley had pneumonia right before her first birthday and had a lot of trouble taking her bottle. As a matter of fact, her surgeon wanted to put her on a NG tube for her feeds since she wouldn't eat. I told them no way! Anyway, during all that she went to a sippy cup. I think it was because her nose was so stuffed up she had a hard time with the bottle and the sippy cup was easier for her. Hopefully your son will just pick it up like she did. I didn't have to wean her at all, she just started refusing the bottle.
YES!!! I still get so scared when she gets food stuck. Fortunately it doesn't happen often. The last time was on Thanksgiving day when she got part of a boiled egg stuck. I had tears in my eyes, my hands were shaking, it was so scary. I have had to learn a lot of patience where feeding is concerned and let her take her time with small bites. Hopefully her meals will take less time as she grows and learns to properly chew EVERY bite!
Vicki

Vicki,

I met with the ped. surgeon that I will be using in the new hospital. I was very impressed with him and feel much more comfortable now.

He is scheduling the endoscopy, possible dilation, within 2 weeks. I can't wait until it's over. He also said there is no way to know for sure from a barium swallow if dilation is necessary. He's seen good looking barium swallows that really had bad strictures and bad looking ones that really were fine. I guess I'll know soon enough.

One other thing, He was very upset that he's not on anti reflux medication. He said that every person has reflux only our esophagus pushes the acid right back down to our stomach but a tef baby's esophagus's muscles don't work as well and the acid tends to sit there. He said if I want the surgery to last 100 yrs. I'd need to protect it with anti-reflux medication. Have you ever heard of such a thing? I HATE giving extra medication and the old surgeon felt he didn't need it. What would you do if you were in my shoes?

By the way, I took my 6 yr old to the ped. for a weight check. He was so happy with her weight, she is now 36 pounds. She's still quite small, but is actually on the chart now. She gain 3 pounds in 6 months, an all time high for her.

How was Ansley's visit with the NICU doctors?

Hope all is well,

Diana

Hello. I was curious about your little ones choking on their food. My daughter has been choking and spitting up food before it even gets to her stomach. She had an upper GI/barium shallow and it came back normal. They also want her to take reflux meds. They think that is all that it is. But she hasn't thrown up in over a week.
Do you think that she is just eating to fast? I do not give her any meds daily and only give the minium to begin with. Now that she is not throwing up, I don't think I will even give her the meds.

Thoughts?

Hi.
About the barium swallow coming back normal, I was told by numerous doctors that a normal barium swallow doesn't mean that there is no stricture. It depends on the angle that the picture is taken and how the barium goes down. I was told that a normal looking barium swallow can be badly strictured and a very narrow looking barium swallow can be a perfectly normal esophagus! My son is (hopefully) going to have an endoscopy done soon and that will give a much clearer picture. My son also chokes and throws up his "stuck" food before it reaches his stomach. I think that it's either a stricture or dysmotility.

About giving reflux meds (read my last post?), I too am unsure. Some doctors say that it's OK not to give them but I think even more say to give them as a precaution. The surgery site is very delicate and we must protect it from acid. Reflux does not mean throwing up. Acid often goes up into the esophagus without it coming as high up as in the mouth, and it can sit on the surgery site and cause stricturing. Another thing, maybe this is what your doctor meant, reflux can cause inflammation of the esophagus which can cause the food to get stuck. The only real way to know whether or not there is bad reflux is to do an endoscopy where they look at the esophagus and do a biopsy.

Good luck with your daughter and let me know how it goes.
Diana

Yes, I did read your last post. I just hate giving her medicine. Especially since she seems to be okay now. But I also don't want to cause her more harm. In about 4 weeks we will be going back to the GI doctor and she is thinking that this is the end of the testing. Do you think I should get a second opinion on a study? Or ask her to do the endoscopy just in case? My husband just had one done and he came home bleeding, which scares me for my daughter.

My son finally had his endoscopy yesterday. His left vocal cord is still paralyzed but the doctor was pleased with his breathing and sounds so he didn't do anything to the cord - he feels that the right one is compensating. We will keep an eye on it, but it will probably be OK on it's own. As far as his esophagus, there was no stricture and not even the tiniest bit of narrowing. The doctor that scoped said that judging from the barium swallow he was sure he would have to dilate, but there was nothing to dilate - it looks great. Just proves the point that a barium swallow is NOT accurate. He feels that if I wait until he has more teeth, his eating will improve greatly but the GI wants to send me to her feeding team to evaluate him and do a modified barium swallow to check where and why the food is getting stuck. That sounds good to me.

My biggest dilemma is whether or not to treat reflux. My original surgeon said that his ea/tef babies don't suffer from reflux and he says the less meds the healthier, but yesterday's surgeon said ALL ea/tef babies have reflux and just as there is a very great risk of a smoker to get lung cancer, so too is the risk of a tef baby, who is not on reflux meds, to get esophageal cancer. I hate giving extra medication but I don't want to risk harming his esophagus. I think I'll email my original surgeon and ask him again. Any ideas?

As far as your dilemma with your daughter, I think a second opinion will confuse you but it just may be the best thing. Research the doctor to make sure it will be someone you trust and perhaps an endoscopy is the best thing. I have certainly lost my trust in barium swallows.

Good luck and please let me know what's happening,

Diana

Diana,

I'm so happy to hear that his esophagus looks good! He has been so fortunate.
As far as the reflux goes, yes I would be confused as to what to do as well. My daughters surgeon had her on Zantac for about a year if I remember correctly. She doesn't take it anymore. He said if I should ever see signs of reflux that I should call him and get her back on it. To tell you the truth, I think each doctor has his/her on theory on things. That is why they call it "practicing" medicine...do any of them know for sure???
Ansley had her development test last week. She did not do as well as I had hoped. She scored average or below average in all areas. Her speech is the biggest issue and she is scheduled to begin speech therapy in May. Not what I wanted to hear, but of course I will do whatever it takes to help her along.
Sorry it took so long to respond. We have been awfully busy remodeling a house and preparing to move.
Hope all is well. Please keep posting updates!
Vicki

Good luck with your move. It's a BIG job but you'll enjoy it. Do you have any idea when the house will be ready?

My son gave us another scare yesterday. My husband wanted to take him to the hospital but I convinced him to wait it out. He was eating cooked vegetables and a piece on carrot got stuck. I had cut a medium sized carrot into circles and then each circle in half (the bigger ones in quarters). Well for the next 4 or five hours, everything he ate he threw up. He was able to drink though. Would such a thing get stuck by Ansley too? About 5 hours after he ate the carrot he went to sleep and when he awoke he was fine. What a relief! I'm wondering if this is really normal for these kids? Is there nothing to do but wait for them to outgrow it? I'm going next week for a feeding eval but I'm not confident that it will help because food doesn't always get stuck so what are the chances that when I finally want it to, it will?

Well, I guess I'll keep you posted,

Diana

Diana,

We finally did get moved into our new house over Easter weekend. We have been renovating this house for six months so it's a relief to be done. Now we have to paint our old house and get in on the market. I will be so happy when all of this is over! It's been such a huge project for our family.

Ansley seems to have a totally different reaction from your son when food gets stuck. You mentioned that it took 4 hours for your son's food to go down, she has never had anything get stuck that didn't come right back up. I think that your son's reaction to stuck food would worry me more than Ansley's. You have also mentioned that he will continue eating and drinking when he has food stuck, Ansley would NEVER do that. She gags so hard when she has food stuck that I think that actually helps dislodge it.
I will say that she has gotten SO much better about chewing. She has not had a single choking episode since Thanksgiving. Does your son chew his food well? I truly believe that a lot of Ansley's problems stemmed from her lack of chewing rather that any real problem with her esophagus and that as she has matured in the last 6 months she's gotten better about it. I've got my fingers crossed for you and your son. I hope that the feeding evaluation will help to ease your mind.
Keep me posted
Vicki

Hi!

I'm glad to hear that your settled in your new home. I remember when we moved - what a job! Good luck selling your old place.

I went for my son's feeding eval. During the first visit, she gave him apple sauce, finely chopped apples and cooked potato - just a couple of bites of each. He got something stuck - either the apple or the potato. Sometimes, the first thing gets stuck and the second sits on top of it so I couldn't know if it was the apple or the potato. In any case she said that the food was moving up and down in his esophagus and she heard it overflow into his trachea. During the second visit we did a modified barium swallow which showed him aspirating. both thin and thick liquids from a cup but not when he drank with a straw. She then gave him cooked potato which he did not get stuck however she saw it stop at the surgery site, go back up, and then down to his stomach. Her recommendations were to feed him only soft foods - at least as soft as a sweet potato - cut into pieces no bigger then half your pinky nail with a sip from a straw cup after every 2-3 bites. There is no way that he will do this. He hates drinking with a straw, really hates drinking altogether and wants real food already. I don't know how I'll deal with this. It might just be easier to put him back onto purees! Also, she wants me to see a pulmonologist due to his aspirating.

Well, I have a appointment soon with the NICU doctors, I think I'll discuss it with them. In the meantime, he's really really adorable and yummy and we love him tons. I guess the most reassuring fact is that I know one day he'll be just like the rest of us.

Enjoy Ansley,
Diana

Hi,

So much has happened since I last posted. Firstly, my son ended up in the ER when he had a piece of food stuck for nearly 12 hr. - and that meant he couldn't eat or drink! In the end it went down on it's own. After that, the one who's been giving us our medical advice said that he doesn't like that this keeps happening and we should go for another opinion. Well, he sent me to a world class surgeon. I spoke with him over the phone for about 20 min and he was really nice but couldn't answer me without seeing my son and his records. OK, he came to my state yesterday and I had gotten all my records (which was quite difficult) and brought them to him. I came in and he refused to look at them. Instead he gave me a whole lecture about the fact that my son was born with gross abnormalities and will never be normal. I must stop going for second opinions and go back to the first doctor and never to anyone else! Boy, I walked out feeling horrible! I spoke to my medical advisor about what happened and he said that surely he was warned by my old doctor that I was coming for a second opinion and he should not get involved. I am SO upset about this. I'm just trying to help my child! They're also telling me now that I should put him back on purees only because they are afraid that he will aspirate anything else. I'm telling you - he's never sick and has certainly never had pneumonia can he be aspirating. so badly? I can't believe that this is considered one of the top children's hospital in the country. I feel like I can't trust any doctors any more and I don't know where to turn.

Sorry for venting. I hope all is well with Ansley. Maybe I'm really overreacting and my son is fine. I guess time will tell.

Diana

Ugh.. I'm so sorry you were treated this way. I think I would call the 2nd opinion dr back and ask what happened. Say you felt like you were blown off after having support from him over the phone. I'd probably also have a talk with the regular dr and see if you can figure out if they were involved. I'm not saying this is the way to go but I'd probably throw something in to the conversation about them being concerned about being 2nd guessed. If they are confident in their diagnosis a 2nd opinion should not be a threat!

Hugs,
Jackie

Hi, Thanks for your advise Jackie.

Actually the 2nd opinion dr. heard that I was upset at the way he treated me and he called to apologize. He told me that he really does feel though, that his issues now are mainly laryngo spasms (???) along with his paralyzed vocal cord. This is not at all uncommon with TEF kids and it's not a surgeons domain. I'm unsure how to proceed now. Go to a swallow specialist or just give him purees and wait to see what happens as he grows? I have no more strength to keep running to doctors just to be told that there is nothing to do for him but if there is something to do, I what to know that I did my best. I also can't believe that he is aspirating. so I haven't been so perfect about keeping him off liquids. I think it's so important for TEF kids to get the hang of drinking. Oh I don't know any more. I think every doctor will have another opinion with this as well. In the mean time he is adorable, delicious and the yummiest thing around!

Diana

diana,

I can totally understand your frustration...you want to do the right thing but what it that. Have you conferred with his PCP lately. Sometimes a "sit-down" with them is required and they come up with a plan.

I hope you are having a good day.
Ellen

Diana,

Wow, I don't even know what to say. The way that doctor treated you is certainly uncalled for. Of course you want what's best for your son. The comment about gross abnormalities and never being normal...that is enough to make my blood boil. Now of course I have never met your son, but TEF babies CAN and DO live completely normal lives. I have read of some TEF children that have many more complications than my daughter, but Ansley is a perfect example of a healthy, "normal", TEF kid. Please don't let one doctors opinion get you down. You are your child's voice and you are doing an amazing job in his care.
I really wish I had some words of wisdom to give you concerning laryngo spasms and vocal cords, but Ansley never had those issues. The only thing I could possibly say is that I remember reading your earlier posts and you seemed happy with your original doctor and his diagonsis. Maybe you do need to go back to seeing that doctor??
As far as the aspirating goes, Ansley aspirated barium once during a dilitation and ended up in the hospital for a week with pneumonia. I don't know that every time you aspirate you get pneumonia though.
I truly, truly wish I could be more help, but I'm afraid I may be making matters worse. Please keep in mind though, that I'm always here to lend an ear. Sometimes that's the best help of all.
Keep me posted on his progress.

Vicki
P.S. I'm trying to get Ansley into a state run speech therapy program since my husband's insurance won't cover it. Keep your fingers crossed for us! I think she would really benefit from it.

Vicki,

You are certainly not making matters worse. I appreciate all advice (and listening ears) (thank you Ellen too). My son, like Ansley, is the most adorable, healthy looking child. Except for food sometimes getting stuck, he is as perfect as can be. That is why I find it so hard to believe that he's truly aspirating. He's almost a year and a half and was only on antibiotics once! People who have heard his story think who knows what and then see him and say that's him? But he seems so regular and normal and I say that's because he is!

As far as going back to his original doctor, how'd you know what I have been tossing over and over in my mind lately? I think he's definitely the best that I've seen so far. My biggest hesitation is that he sent me to a GI because he felt it was no longer a surgeon's domain. He also doesn't return my phone calls (unless I call his cell but I hate doing that) so I'm afraid that he's no longer interested in my son (I can't understand why except that he's VERY busy). I'm not sure. In the meantime, he's supposed to be only on purees but I'm not being so strict because I really think the doctors are getting a bit carried away. As far as pharyngal spasms (sorry not laryngal spasms - my mistake) I'm not really sure what that is but I don't even believe that he has them. I have an appointment with the GI next week - I'm not sure if I will keep it - don't think she any help but I don't what to burn my bridges either.

Good luck with Ansley's therapy. I hope you get it, I'm sure she'll do great with it.

Keep you posted,

Diana

Vicki, I ended up taking your advice and I'm so glad I did so. I went yesterday, back to my original surgeon and he was so nice to us. He looked through all the reports I brought and then at the CD of the MBS. As he was reading he said left vocal cord paralysis, interesting. I said does it make a difference, left or right? He answered that the surgery was on the right so if it happened during the surgery, it would have been on the right.

After discussing his symptoms and reading the reports, he said we should perhaps think of dilating. However, he then looked at the CD of the MBS he showed me how nice it looked and pointed out to me how much wider his lower esophagus became since birth. He didn't think in the long run it was necessary. He says that it's mainly a lack of muscle coordination in the esophagus which will come with time. The best thing, he said, would be to see an esaphageal motility doctor but he doesn't know any and I had already been told that the nearest good one is at a hospital 4 and a half hours from my home. I think I'll wait and see. He also suggested OT and PT which should improve the muscle coordination. I really think he's right. He also said that people who aspirate get pneumonia. Also, aspiration is usually a problem in people with reflux and my son has no signs of reflux so he really wouldn't worry. He did not think I must keep him off liquids. Finally, I asked if I must continue with the GI (I think it's just a waste of time - she does nothing other than weigh him and with no traffic it's a 45 min trip). He said he understands that it's a hassle but he believes that it's good to have her follow him on a regular basis. So, I guess I'll be going.

By the way, I was talking to his secretary on the way out. She commented on how great he looks and was remembering what he used to look like. I told her what the last doctor said about him never being normal and she was horrified that he could say such a thing. After all HE IS NORMAL! And he certainly looks it. One day this will all be history.

Have you had any success with Ansley's therapy? Hope all is well with her,

Diana

Diana,

I'm glad that everything went well for your son. As I've told you before, Ansley has has episodes of choking on her food when she was younger. She hasn't had a problem like that since Thansgiving. I feel like she just needed that time to mature and learn to chew properly without choking. Hopefully you will see progress with your son as he grows and develops.
Ansley did qualify for FREE speech therapy through the state we live in! I'm actually meeting with them in the morning to set up a schedule to begin. I'm super excited because I think this is really going to help her.
Keep posting, love to hear from you
Vicki

Vicki,

How's Ansley's speech therapy coming along? Probably a bit early to see progress but it'll come. Hope she's enjoying it.

As far as my son is doing, BOY AM I CONFUSED!!! I think you've seen me write that before but I can't believe what happened this weekend! On Thursday, We were home for about 2 minutes when I heard a hiccup. Right away I suspected that he'd found something to eat. What he does lately though, is he hides in a corner because he knows that he's doing a big no no. Anyway, sure enough he'd gotten a bagel from a bag of bagels out of his reach on the dining room table but he somehow manages to get hold of everything. My daughter found him and grabbed away the bagel but it was to late. He'd already eaten a piece. In an effort to get him to either throw up or push the bagel down, I gave him some cooked sweet potato. After a few bites, he started to throw up the sweet potato and little bits of bagel, but the stuck bagel remained stuck. For the next 2 hours, every 3-4 minutes he would through up either plain saliva or mixed with sweet potato. Twice his face turned purple and I was really nervous. So after 2 hours I called my husband who right away called an ambulance and our original surgeon who advised us to go back to the first hospital being that it's closer to our home. Well, I didn't care because I didn't expect them to do anything anyhow. I thought it'll pass and they'll send us home. Well, they decided to admit us (he continued throwing up for about 6 hours) and wait for Friday to scope him. By the time morning came I was sure that the bagel passed and I was ready to go home. They didn't want to let me leave without an endoscopy. I said OK but I was sure everything would look just fine and they'd send me straight home. I did ask them to do a broncoscopy at the same time to check for aspiration damage while he was under anastesia. They were able to get a pulmonologist to come. Well, the GI went first. She came out to discuss her finding. Firstly, I was right, the bagel had passed. Secondly, her a mm scope got stuck - there was a pretty significant stricture and thirdly she found mild nodules cause by reflux. I asked if the stricture could have developed since March when he'd had his endoscopy and she said no. It must have been there then also. She wants to dilate every 2 weeks until the stricture is gone. Also, his March scope showed no signs of reflux and he has NO symptoms. I find it so hard to believe that there are already nodules from reflux. Then the pulmonologist came out and asked if I'm sure he never had pneumonia. I assured her that he's the healthiest kid around. No pneumonia's and besides for that cough in the beginning of the winter, he's never even had a cold! She couldn't believe it because he lungs are so red and swollen as if he has chronic pneumonia. I am SO confused at everyone's findings. I want to go back to my surgeon to explain how this is possible. (Unfortunately, he was out of the country so he was not involved.) Every other doctor assured me that there is no stricture. I knew there was no reflux and he's so healthy, how can his lungs look so bad? Well both doctors took biopsies I'm anxiously awaiting the results. Also, remember the GI that I'd met in the emergency room back in November that I'd HATED? I ran around all over trying to find the best care for my son. Well, it was that same doctor that found the stricture. I find it very ironic. She gave me pictures of the stricture and if my surgeon agrees with her, I just might drop all the new doctors and stick with her. (She happened to be MUCH nicer this time).

By the way, you wrote that Ansley's doing much better now, do you still cut her food into very small pieces?

Have a great day,
Diana

Diana,
 Hi! Wow you have had a lot going on with your son. I'm checking in with you to see if he has had a dilitation since you last wrote? I've told you before that Ansley had them every week for months, then every other week. She stopped having them shortly before her first birthday. She's not had a dilitation now in over a year and she is doing great. But I wonder if the key to her good health is the fact that she had dilitations so often and starting out so young. She had her first dilitation while she was still in the NICU!!!! It just makes you wonder if she would have done as well without them.
You asked if I still cut her food into very small pieces, yes to an extent I do. It depends on what kind of food it is and if it is easy to chew. She has gotten great at chewing her food now without all the swallowing it whole that she did when she was younger. But if it is something like pork or chicken, then yes I'm still very skittish about giving her large pieces.
She has had 4 speech sessions now and is doing very well with them. She loves her therapist, and I love watching her learn! It's going to really benefit her I think.
Let me know how your son is doing. The dilitations may be a little tough, but I truly believe they make a diffence.
Happy 4th of July to you and yours
Vicki

Vciki,

Hope you had an enjoyable July 4th.

Here's the update on my son. As I'd said, we made an appointment with the surgeon and this time I was really in for a surprise. He had 2 emergency surgeries and ran into the office in between to see his patients. I guess that was bad because he was very rushed. Also, if you recall, my son had gotten the bagel stuck late on a Thursday evening. He was then at a conference and when we called him, he stepped out to answer his call and he missed something important. (He spoke to us for 1 minute.) Well, he said he'd been very mad at us. Can you imagine. My son had such a bad stuck that he couldn't swallow his saliva for 2 hours already, had turned colors twice and he was mad at us for calling his emergency number! He said we must remember that we are not his only patient! Then he started telling us about a Nisson Fundeplication (or something like that) surgery he could do when my son turns 2. This is a surgery to prevent reflux. My son has NO signs of reflux - why operate? (The biopsy results showed mild reflux, I don't think that's a big deal - probably most 1 year olds have it.) Well, I then showed him the pictures of the "stricture". He didn't think it looked bad at all but advised us to stick with this doctor and dilate. I tried asking how it's possible that the scope passed easily back in March and he said that it's our problem, we shouldn't be going to so many doctors. I was so turned off by this visit. I did however go for a second dilitation (without any confidence) but because I'm hoping that it will only help. I am still unsure if he really needs it though. My surgeon did come check him right after the dilitation and said that it looks good (what does that mean?) and I should stick with this GI. She wont do anything without consulting him. She wants to dilate again in 3 or 4 weeks. She warned me that he will need this until he's a teenager. (Until he stops growing.) My medical adviser is trying to convince me to bring the pictures back to that surgeon who was mean and said it was only pharyngal spasms. He already spoke to that doctor and he wants to see me again. He said that he will be really nice to me this time. I don't want to go but for my son's sake, since I'm not confident with this new GI and because I know that this other surgeon IS the top in this field (I really believe that he had been warned last time not to see me) I just might go. He won't be in my state until the end of July so I have time to decide. (I did speak to one of his TEF patients - a friend of my sister-in-law - he did a 10 hour surgery on her son to correct a recurrent fistula. She spent a couple of months researching doctors before choosing him because she knew it was a complicated surgery and wanted only the best for her son - he's been son sick. She is really pushing me to go, telling me from her experience how important another opinion is and reassuring me how great of a doctor he is.)

By the way, the tests that the pulmonologist took came back normal. I can't understand this aspirating. business and why his airways looked so inflamed. Does Ansley ever cough after she drinks?

I read your blog and I'm excited for you about wanting another child. Just this Friday I spoke with 2 TEF moms that had babies within the past 3 weeks. Both babies are completely healthy. Hope that is reassuring to you.

I happy to hear that Ansley is enjoying her therapy and I'm sure you'll soon notice lots of improvement. My son's been getting speech/feeding therapy for a while now and he's talking so cute. He labels body parts and animal sounds. Expresses his wants and calls us by names. He's even starting to put 2 words together. It's really cute!

I'll keep you posted,

Diana

Vicki,

Lots have happened with my son. I've gone back twice for dilitations. So far they've been unsuccessful. I did go to see this other surgeon and he feels strongly that reflux is causing the food to get stuck. I assured him that he does not have reflux - he's NEVER had any symptoms and it never showed up on a barium swallow. He said all TEF babies have reflux but most of them have silent reflux and that is the danger of it. He also said that regular barium swallows do not detect reflux. To prove his point he sent me for a barium swallow with an upper GI. This did not show any stricture but did show moderate - severe reflux. I guess he was right about that. I have to go back to him to find out his plan but I do not think that I want to do the reflux surgery. I went back the next day to the NICU doctors and they said that his weight is horrible! They were SO upset about it. He didn't gain anything in 4 months! He weighs about 20 pounds and is 20 months.) They don't care if the barium swallow doesn't show a stricture - they say if he's symptomatic and not gaining weight he MUST BE DILATED! Well, tomorrow I am scheduled for another dilitation so I guess that I will go though I'm still unsure if he really needs it. The GI said she will give it one more shot and if she doesn't see improvement she will send me back to the surgeon (my original one). I guess we'll wait and see. In the meantime, I started him on pediasure. I remember Ansley was small - did you ever try pediasure? How is her weight now?

Hope all is well with Ansley and I read your blog. I was glad to hear that your hormone levels were good and we're keeping our fingers crossed for you. Good Luck!

Diana

Diana,

20 lbs. does not sound all that unreasonable to me. Ansley was about the same at that age. She is now 2 1/2 and about 23-24 lbs. I would not be too concerned with his weight. I didn't try Pediasure with her.
How is your son's eating now? Is he eating solid foods at all?
Keep us posted on how he is doing!
Vicki

Vicki,

We went back for another dilitation and this time the doctor was happy with what she saw. She dilated to 11mm now and wants to repeat it once more to 11mm and then wait to see how he does. At this next dilitation, they want an ENT and his surgeon present. The pulmonologist wants the ENT to scope to rule out a laryngal cleft and a recurrent fistula. She says that either of these could cause aspiration. (by the way, does Ansley ever cough when she drinks? I spoke with 2 other TEF moms who said their daughters also cough when or after drinking.) I really don't think he has either of these but I guess the scope is just to be sure. They also gave me the option of injecting his vocal cord. This will thicken it and lessen the chance of aspiration and will strengthen his voice. On the other hand it could make breathing a little more difficult. I'm unsure what to do about that. The GI wants his surgeon there, I think to ask his opinion about further dilitations. I'm very happy to have him there.

About his weight, I think their concerned not only because he's small, but also because he's not growing. He was 20 lbs in April and he's still 20 lbs. They think it's because he's still not on solid food and he's just not getting enough nutrition from the purees. Also, the growth charts are different for boys and girls. While 20 lbs would certainly be small at this age for a girl, it's tiny for a boy. I tried the pediasure but it's not agreeing with his stomach. He gets so constipated that he can't eat anything else. Talking about small, I think I've told you that my 6 year old has always been small. Well, I took her for a well check yesterday and the doctor wants me to see an endocrinologist. She is now 37 lbs and short. The Dr. says if she continues along this curve that she always been on, she will never hit 5 feet. My husband and I are both tall and I think that is also concerning the doctor. I don't think that I'm so concerned. Perhaps because I'm tall, I like short people. I think I'd be much more concerned if she was a boy. I'm not sure what I'll do. My husband thinks I should just push her to eat more and she'll grow. The Dr. said never to push a kid to eat. I guess I'll think about it.