Alright so she has this-
http://en.wikipedia.org/wiki/Achalasia
Sorry not the best source but I'm short on time. It was all explained to me with a screaming child on my lap. We have a follow up next week to talk more about results.
So anyways-about what happened. She was taken into preop about 8 am. The test involves a tube placed in the nose, down the throat, and then into the stomach. They offer placement of the tube with either nothing or general anesthesia. We chose anesthesia as there was no way they were gonna shove a tube down her throat with her awake. We didn't want her remembering that.
So they gave her her Versed but unfortunately they took her before it peaked so we missed the funniest parts (anyone whose had a child with Versed will know what I mean!).
She was put unde and then the tube was placed in her nose into her stomach. She was then woken up slightly, and she went to recovery to wake up more.
Children's is great. They do nothing until the Versed is kicked in. Everything including IV's is done once they are asleep with general anesthesia. You are allowed to be with them almost all the time and they can bring their lovies the whole time (barring sterile surgical procedures but then the lovey is put back before they wake up).
So we both went back when she was in immediate recovery. She normally does HORRIBLE with anesthesia. Screaming, thrashing, sweating, vomiting. It's awful. This time she did great. Just out of it and very dazed. Never cried or fussed. The first thing she said was "I can't really move my arms" and waved her arms around like a robot which made us smile (she had arm restraints on that force their arms to stick straight out). She just kept saying over and over "Do I have a straw in my nose?" over and over. As she woke more she said swallowing her spit hurt so she wanted to spit in a bowl which they let her do. She clutched the mask from when they bagged her (before they place the breathing tube they breath for the patient with a bag valve mask). They had given it to her and it smelled like oranges (kids can choose what flavor gas they want lol). She never let it go and in a drunken voice kept saying in a breathy voice "gimme my mask. I need to smell it" and then smelled in like a kid huffing paint. Another thing that made us smile
They then put her into regular recovery and she continued to do great! Just little fussies but she was sleepy. She asked for a mirror to see the tube and that made things better I think.
At 10:30 they thought she had woken enough to do the test. The test involves a swallow study with the tube in place. She has to drink water, barium, thickened liquids, purees like pudding and solid foods. They wheeled her down to radiology and parked her in the hall. It was then it all went down hill. She started to really wake up and was having a little panic attack. She started screaming and crying hysterically which made the tube worse. She kept begging us to take it out. She was very very scared and my mommy heart broke listening to it.
They told us for the test itself we couldn't be in there. It was a small xray room and there would be a doctor, radiologist, speech language pathologist, OT, two motility nurses, and a nursing student. There wasn't room. And it was probably for the best. If we were in there she'd just be screaming for us the whole time. Out of sight, out of mind kind of thing. They asked the nursing student to pick her up, wires and all, and carry her in. The look on that little 18 year old's face was priceless. Welcome to nursing honey. So she carried our screaming, drooling, spitting child hooked up to everything in the book thrashing around into the room and that was that.
We were taken to the waiting room pretty far away. We could hear her screaming and crying. Finally after 20 min a nurse came out and said despite crying she was doing good. She had done everything they told her, ate and drank what they told her (which I never thought she would) and only cried between bites. I guess the doctor was bribing her saying she would get a prize at the end and giving her clues to guess. I guess that distracted her. After each bite, he'd give her a clue like "it's green". It's "skinny". It "goes in a wallet or purse", "you can trade it" etc. I guess that helped her through. The nurse went back in the room and said it'd be another 25 minutes.
So we waited and listened to screams and cries. They finally came and got us. We walked in just as they were pulling out the tube. Now I've seen (and taken out) many a tube in throats and noses but I still was taken aback walking in at that moment. I quick walked in despite their objections and swooped her up and snuggled and rocked her. It took her another 30 min to calm down. She started crying about her IV then. *sigh* The doctor kept giving her clues to the "prize" and then pulled some money from his wallet to give to her which I thought was sweet. Patrick joked we'd see it on the bill when it comes
So the doc showed us the images and graphs and weird colored things we didn't understand. He said most people have peristalsis (involuntary muscle contractions) that propel food from the back of the throat, down the esophagus, into the stomach, out into the intestines, and then propels in to the rectum where you push it out. We have no control over those muscles. They just squish and push down food.
Well she had zero muscles working her entire middle and lower esophagus and the valve to her stomach wasn't very strong. She doesn't complain of reflux symptoms (but had it bad as a baby) so no meds for that right now. The food would get swallowed, and just stop in the middle of her esophagus. She'd have to take lots of swallows after rapidly to get it down (which we always noticed). Water and purees were the worst. The food stayed in her esophagus for like 3 minutes. That's a LONG time to have food in your food pipe! It explains why she always says stuff gets "stuck" and why she has no desire to eat. I wouldn't either! It was odd.
He said the test is still fairly knew and they don't really know what to do with the results yet. They have seen a few other kids with it but as of right now don't have the technology to really interpret the results or treat it. They said as it becomes more common and technology advances, some treatment might become available in the future. She's too young for any of the standard treatments and I guess they don't really work anyways and are just a quick fix that doesn't last long. It's all involuntary muscles so it could be nerve related, or messages not getting where they need to, or the muscle itself. All things you really have no control over or can fix.
So right now we are going ahead with tonsils to see if that helps (hers are huge and deep and food gets stuck on them) and then she will be retrained to swallow (or try). They are switching her to a feeding therapist who I guess is best in the area. The retraining may do nothing. And maybe as an adult she'll be able to overcome it, but from researching it, it appears it just gets worse overtime. I'm under the impression she will most likely always be tube fed to bypass that part of her digestive system
So that's that. Sorry it's so long. But now we know there is a physical cause. He said he doesn't know if that's the main problem, or part of a bigger problem. She has other issues with her mouth and her sensory issues, and tonsils, and her autism that could all be playing a role. For all we know, without those other issues, this problem alone might not have been such a big deal. But with them all combined, it's the perfect storm
http://en.wikipedia.org/wiki/Achalasia
Sorry not the best source but I'm short on time. It was all explained to me with a screaming child on my lap. We have a follow up next week to talk more about results.
So anyways-about what happened. She was taken into preop about 8 am. The test involves a tube placed in the nose, down the throat, and then into the stomach. They offer placement of the tube with either nothing or general anesthesia. We chose anesthesia as there was no way they were gonna shove a tube down her throat with her awake. We didn't want her remembering that.
So they gave her her Versed but unfortunately they took her before it peaked so we missed the funniest parts (anyone whose had a child with Versed will know what I mean!).
She was put unde and then the tube was placed in her nose into her stomach. She was then woken up slightly, and she went to recovery to wake up more.
Children's is great. They do nothing until the Versed is kicked in. Everything including IV's is done once they are asleep with general anesthesia. You are allowed to be with them almost all the time and they can bring their lovies the whole time (barring sterile surgical procedures but then the lovey is put back before they wake up).
So we both went back when she was in immediate recovery. She normally does HORRIBLE with anesthesia. Screaming, thrashing, sweating, vomiting. It's awful. This time she did great. Just out of it and very dazed. Never cried or fussed. The first thing she said was "I can't really move my arms" and waved her arms around like a robot which made us smile (she had arm restraints on that force their arms to stick straight out). She just kept saying over and over "Do I have a straw in my nose?" over and over. As she woke more she said swallowing her spit hurt so she wanted to spit in a bowl which they let her do. She clutched the mask from when they bagged her (before they place the breathing tube they breath for the patient with a bag valve mask). They had given it to her and it smelled like oranges (kids can choose what flavor gas they want lol). She never let it go and in a drunken voice kept saying in a breathy voice "gimme my mask. I need to smell it" and then smelled in like a kid huffing paint. Another thing that made us smile
They then put her into regular recovery and she continued to do great! Just little fussies but she was sleepy. She asked for a mirror to see the tube and that made things better I think.
At 10:30 they thought she had woken enough to do the test. The test involves a swallow study with the tube in place. She has to drink water, barium, thickened liquids, purees like pudding and solid foods. They wheeled her down to radiology and parked her in the hall. It was then it all went down hill. She started to really wake up and was having a little panic attack. She started screaming and crying hysterically which made the tube worse. She kept begging us to take it out. She was very very scared and my mommy heart broke listening to it.
They told us for the test itself we couldn't be in there. It was a small xray room and there would be a doctor, radiologist, speech language pathologist, OT, two motility nurses, and a nursing student. There wasn't room. And it was probably for the best. If we were in there she'd just be screaming for us the whole time. Out of sight, out of mind kind of thing. They asked the nursing student to pick her up, wires and all, and carry her in. The look on that little 18 year old's face was priceless. Welcome to nursing honey. So she carried our screaming, drooling, spitting child hooked up to everything in the book thrashing around into the room and that was that.
We were taken to the waiting room pretty far away. We could hear her screaming and crying. Finally after 20 min a nurse came out and said despite crying she was doing good. She had done everything they told her, ate and drank what they told her (which I never thought she would) and only cried between bites. I guess the doctor was bribing her saying she would get a prize at the end and giving her clues to guess. I guess that distracted her. After each bite, he'd give her a clue like "it's green". It's "skinny". It "goes in a wallet or purse", "you can trade it" etc. I guess that helped her through. The nurse went back in the room and said it'd be another 25 minutes.
So we waited and listened to screams and cries. They finally came and got us. We walked in just as they were pulling out the tube. Now I've seen (and taken out) many a tube in throats and noses but I still was taken aback walking in at that moment. I quick walked in despite their objections and swooped her up and snuggled and rocked her. It took her another 30 min to calm down. She started crying about her IV then. *sigh* The doctor kept giving her clues to the "prize" and then pulled some money from his wallet to give to her which I thought was sweet. Patrick joked we'd see it on the bill when it comes
So the doc showed us the images and graphs and weird colored things we didn't understand. He said most people have peristalsis (involuntary muscle contractions) that propel food from the back of the throat, down the esophagus, into the stomach, out into the intestines, and then propels in to the rectum where you push it out. We have no control over those muscles. They just squish and push down food.
Well she had zero muscles working her entire middle and lower esophagus and the valve to her stomach wasn't very strong. She doesn't complain of reflux symptoms (but had it bad as a baby) so no meds for that right now. The food would get swallowed, and just stop in the middle of her esophagus. She'd have to take lots of swallows after rapidly to get it down (which we always noticed). Water and purees were the worst. The food stayed in her esophagus for like 3 minutes. That's a LONG time to have food in your food pipe! It explains why she always says stuff gets "stuck" and why she has no desire to eat. I wouldn't either! It was odd.
He said the test is still fairly knew and they don't really know what to do with the results yet. They have seen a few other kids with it but as of right now don't have the technology to really interpret the results or treat it. They said as it becomes more common and technology advances, some treatment might become available in the future. She's too young for any of the standard treatments and I guess they don't really work anyways and are just a quick fix that doesn't last long. It's all involuntary muscles so it could be nerve related, or messages not getting where they need to, or the muscle itself. All things you really have no control over or can fix.
So right now we are going ahead with tonsils to see if that helps (hers are huge and deep and food gets stuck on them) and then she will be retrained to swallow (or try). They are switching her to a feeding therapist who I guess is best in the area. The retraining may do nothing. And maybe as an adult she'll be able to overcome it, but from researching it, it appears it just gets worse overtime. I'm under the impression she will most likely always be tube fed to bypass that part of her digestive system
So that's that. Sorry it's so long. But now we know there is a physical cause. He said he doesn't know if that's the main problem, or part of a bigger problem. She has other issues with her mouth and her sensory issues, and tonsils, and her autism that could all be playing a role. For all we know, without those other issues, this problem alone might not have been such a big deal. But with them all combined, it's the perfect storm
I'm not sure how to feel. I'm glad we finally know why. But at the same time I'm upset because it's not something fixable. And looks like over time it gets worse. But Patrick said it best. "She's not hopeless." So we'll keep trucking a long but I think we are in for a longggg ride. The mere thought of tube feeding and buying formula for ...well....forever....until she takes over herself seems daunting. And scares the crap out of me. I won't lie. We thought this would be a 3-5 year thing, and if they can't retrain her muscles, it may be much much longer.
So I'm happy. And sad. And I don't really know how to feel. Life has taken turns we never expected. But it's here. And we can't change it. So we have to make the best.
Our next step is tonsils and adenoids out on the 28th. So wish us luck for that fun adventure!
So.....that's that.
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