A Mom on the trach forum posted this in honor of Mother's Day. It's called Mother's Lie written by Lori Borgman. I think there is some truth in it for all mothers even those without a special needs child. We hope for so much for our children. The challenge is to have our hopes and yet accept them for who they really are. Good and bad.
SOME MOTHERS GET BABIES WITH SOMETHING MORE...
My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes.
Of course, that's what she says. That's what mothers have always said.
Mothers lie.
Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.
Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but we mothers want what we want.
Some mothers get babies with something more.
Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.
Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?
I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.
As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.
Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear.I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require, intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.
You're a woman who wanted ten fingers and ten toes, and got something more.
You're a wonder.
May 10, 2008
May 7, 2008
Ainsley Drinking From a Bottle
Yesterday I was talking to Ainsley's speech therapist about how Ainsley's tongue has been moving so much more, especially when she's wearing the PMV. It's a curious thing and who knows why or what it means. I like to analyze things but even I get frustrated trying to figure it out. But it did lead to discussion of oral motor skills and feeding and the part that the tongue plays in both speech and eating. And got me thinking...
I've often wondered if it might make more sense to focus on bottle feeding before learning to use a sippy cup and eat baby food. I know society says that once a child reaches a certain age they should be using a cup. But is that more for our comfort or the ease of the child? The therapist has told me she's past the age of using a bottle. But I think a sippy cup is harder to draw from and requires stronger lip closure. And perhaps one must progress through the stages of eating because one skill builds upon another. That the bottle is easiest to control and mastery of that control is essential to moving to the next stage of being able to move food around in your mouth. Perhaps Ainsley has not been developmentally ready. She is only now just starting to be able to move her tongue around and I've recently learned that tongue "lateralization" is key to being able to move food around in your mouth. So it makes sense that if she was having trouble controlling the food that she would not do well. Perhaps as she makes gains with motor skills she will also do better with drinking and eating . So much is unknown about what she will be capable of because of her cerebellum.
So as a result of this conversation I decided to give the bottle a try again and she did surprisingly well. She was doing even better before I pulled out the camera, as often happens with kids, but I still got a little good video footage. I'm wondering if giving her practice with the bottle could help by giving her more opportunities to practice controlling fluid in her mouth and the timing required for swallowing. I think sucking from the bottle also might help her with tongue movement and controlling the urge to gag when the tongue raises in the back of the mouth. Water seems like the best choice since we know that as the swelling diminishes she will aspirate based on the FEES and swallow studies. So this was yesterday.
Today while I was trying to type this post I tried again. Today, not so hot with the bottle. Such is life with Ainsley. Confusing. Frustrating. Always changing. Never knowing what to expect.
I've often wondered if it might make more sense to focus on bottle feeding before learning to use a sippy cup and eat baby food. I know society says that once a child reaches a certain age they should be using a cup. But is that more for our comfort or the ease of the child? The therapist has told me she's past the age of using a bottle. But I think a sippy cup is harder to draw from and requires stronger lip closure. And perhaps one must progress through the stages of eating because one skill builds upon another. That the bottle is easiest to control and mastery of that control is essential to moving to the next stage of being able to move food around in your mouth. Perhaps Ainsley has not been developmentally ready. She is only now just starting to be able to move her tongue around and I've recently learned that tongue "lateralization" is key to being able to move food around in your mouth. So it makes sense that if she was having trouble controlling the food that she would not do well. Perhaps as she makes gains with motor skills she will also do better with drinking and eating . So much is unknown about what she will be capable of because of her cerebellum.
So as a result of this conversation I decided to give the bottle a try again and she did surprisingly well. She was doing even better before I pulled out the camera, as often happens with kids, but I still got a little good video footage. I'm wondering if giving her practice with the bottle could help by giving her more opportunities to practice controlling fluid in her mouth and the timing required for swallowing. I think sucking from the bottle also might help her with tongue movement and controlling the urge to gag when the tongue raises in the back of the mouth. Water seems like the best choice since we know that as the swelling diminishes she will aspirate based on the FEES and swallow studies. So this was yesterday.
Today while I was trying to type this post I tried again. Today, not so hot with the bottle. Such is life with Ainsley. Confusing. Frustrating. Always changing. Never knowing what to expect.
May 3, 2008
Miracles
This is an excerpt from a conversation moms were having on the trach forum. We often discuss how we feel about things well meaning people say to us. This time the subject was how people feel about when someone tells them they are expecting a miracle for their child. This is what I wrote:
Here is what Webster's says:
Miracle-An extraordinary event in the physical world which surpases all known human or natural powers and is ascribed to a supernatural cause(or work of God).
Based on that definition I do NOT believe that miracles occur. I believe that the fact that our children live and thrive is a testiment to the human spirit and advances in medicine. The doctors have been able to do amazing mind boggling things, but is it a miracle? No.
Some people when they are praying for a miracle are hoping for the Websters variety. An act of God or the supernatural that changes the reality of what is that cannot be explained by medical science or fact. Sorry but I think hoping for this kind of miracle is just foolish. The blind don't see and the paralyzed don't walk for reasons that do not have a medical foundation. I think that apparent medical miracles have a basis in science. Not to say that things can't improve dramatically or unexpected for reasons we can't see or understand.
Quote: "God only gives you what you can handle" or "God gave you her because you're such a strong person". Please. Is that supposed to mean we got the shaft because we're strong, because we could handle it? Ugh. I love my daughter more than anything, but I refuse to believe that there is some higher purpose to her being born into our family.
I don't like or believe that either. Bad things happen to good people. Good things happen to bad people. There is good and bad in everything. People ARE sometimes given more than they can handle in life. There are sad sad cases of parents murdering their children and or committing suicide. We are strong. But we are also weak.
And it is not a blessing to a child to be born with birth defects (for lack of a better term). Can they rise above it and be even more amazing? Yes. But if it was so great to have a trach or have medical conditions to build character we would want that for all the worlds children. Ridiculous. To believe that what they suffer through was given by God as some sort of teaching lesson for them or myself would only make me believe in a God that is cruel. And I don't believe that.
Here's a link to the whole thread if you are interested in reading the varied opinions of moms with special needs children http://www.tracheostomy.com/forum/showthread.php?t=15937 and what they think about hoping for a miracle.
Here is what Webster's says:
Miracle-An extraordinary event in the physical world which surpases all known human or natural powers and is ascribed to a supernatural cause(or work of God).
Based on that definition I do NOT believe that miracles occur. I believe that the fact that our children live and thrive is a testiment to the human spirit and advances in medicine. The doctors have been able to do amazing mind boggling things, but is it a miracle? No.
Some people when they are praying for a miracle are hoping for the Websters variety. An act of God or the supernatural that changes the reality of what is that cannot be explained by medical science or fact. Sorry but I think hoping for this kind of miracle is just foolish. The blind don't see and the paralyzed don't walk for reasons that do not have a medical foundation. I think that apparent medical miracles have a basis in science. Not to say that things can't improve dramatically or unexpected for reasons we can't see or understand.
Quote: "God only gives you what you can handle" or "God gave you her because you're such a strong person". Please. Is that supposed to mean we got the shaft because we're strong, because we could handle it? Ugh. I love my daughter more than anything, but I refuse to believe that there is some higher purpose to her being born into our family.
I don't like or believe that either. Bad things happen to good people. Good things happen to bad people. There is good and bad in everything. People ARE sometimes given more than they can handle in life. There are sad sad cases of parents murdering their children and or committing suicide. We are strong. But we are also weak.
And it is not a blessing to a child to be born with birth defects (for lack of a better term). Can they rise above it and be even more amazing? Yes. But if it was so great to have a trach or have medical conditions to build character we would want that for all the worlds children. Ridiculous. To believe that what they suffer through was given by God as some sort of teaching lesson for them or myself would only make me believe in a God that is cruel. And I don't believe that.
Here's a link to the whole thread if you are interested in reading the varied opinions of moms with special needs children http://www.tracheostomy.com/forum/showthread.php?t=15937 and what they think about hoping for a miracle.
May 2, 2008
I Was Thinking.....
About vomit. Yes I know. Gross.
Why am I thinking about vomit? Because Ainsley's been sick and thrown up a few times in the last couple days and a few people who were there at the time have been surprised at how I "know" when it's going to happen, so its been on my mind. Not that this is new. I can't tell you how many therapists, doctors and regular people have asked me how I know. And it IS uncanny that I can tell. It can be the look on her face, the way she moves her tongue, the way she coughs, or even the way she holds her breath. 5% of the time she gets sick when I think she won't, another 5% of the time she doesn't get sick when I think she will, but 90% of the time I know. How do I know? Is it mommy intuition? Or is it experience? Steve is not a very good judge and he's seen her throw up countless times. I was trying to figure out how many hours of my life have I spent now watching her to see what's going to happen. How many hours suctioning and praying that it wouldn't cause her to vomit? I'd estimate it's about 4,000 times I've suctioned her and watched to see if it was going to cause her to vomit. I'd estimate about 800 times I've seen her throw up. It's a little bit like having a child with the flu that never goes away. One of the moms on the trach forum was saying last week how she lost it over her son vomiting after she's worked so hard to give him a feeding, and I SO totally could relate.
I can't explain what its like to see your child explode like a volcano and vomit their entire feeding up into their face and watch their panic as the thickened curdled milk covers their eyes, nose and spills into their trach like lava. Seeing them thrash back and forth trying not to drown in it. It all happens within a second or two but like a car crash everything seems to be in slow motion and last for minutes. Even if Ainsley never threw up ever again I know I will never get that image out of my head. The feelings of being totally helpless and frustrated. The despair that on a bad day hits you in seconds that can be so overpowering that you scream before you can think twice about whether the neighbors can hear you. I don't think you could get it unless you have a medically complex child that is a chronic vomiter.
So when it seems that Ainsley has stopped vomiting you can imagine how thrilled I am. But I'm hesitant and afraid to do anything differently should it return. I'm a prisoner to the threat of vomit. And so the last few days have brought back all the bad memories.
Ainsley had an unexpected low-grade fever Wednesday and I suspected an ear infection, since no one else in the family was sick. I scheduled a doctor appointment late Wednesday for the following morning. In the morning it became clear that despite being virtually isolated she had somehow caught a cold but it was too late to cancel the appointment so I took her in anyway. The right ear was a little red but we held off on antibiotics, and her lungs were clear. Later in the day she still had a low-grade fever but by night her heart rate was up in the 190 range and at 2am her temperature hit 103.3 on Motrin. Even after I spent half an hour sponging her head with a wet washcloth, put her on oxygen to try to bring up her sats and bring her heartrate down she still woke up needed suctioning a few times after that. It was already 1am when I went to bed because I was working on a photo project I'd planning on bringing to the preschool so I didn't get much sleep. I'd committed to work at the preschool and was even looking forward to it. Every few weeks I think "how bad can it be" and work up the nerve to give it another try. Every time I'm reduced to a blubbery pile of tears at some point in the day but I guess I'm slow to learn. At least today it was at the end of the day not before I even left the house. Since at 8:30 her temperature was totally normal I got ready to go but once she woke up it started to climb again. Still, I figured she can sleep while I filled in as a working parent and she'll just lay in the stroller or on the blanket so she shouldn't get anyone sick. The day goes pretty well. I'm even able to juggle taking photos for the school in between suctioning and tube feeding. Fine, that is, until Adrian refuses to join the class in the lunchroom because he couldn't sit next to his best friend. I'm trying to take pictures of lunch for the teacher and frustrated that my son is causing a scene. Eventually that is resolved when a spot opens up and he can sit where he wanted. Then I'm inside to clean the bathrooms and floors (chalk pounding day) and suctioning Ainsley after she was awoken from napping in the stroller to find she's coughed so much today that she's started to bleed(trace amounts) when the teacher comes in to tell me Adrian is now refusing to come in from the playground. Apparently because he wanted to blow bubbles with the giant bubble wand right when they were being put away. I pick up Ainsley because she can't be left alone and sling the suction machine over my shoulder and run outside to try to help get Adrian in. He's screaming, crying and running from me. Whichever way I run he runs the opposite and carrying Ainsley I can't possibly catch him so all I can do is yell to try to get him to come to me so we can talk. Then he can't even hear a word I say because he is screaming in my ear to leave him alone. All the while I am desperately trying to calm down my four year old who is physically resisting me while balancing my child who is as big as a two year old and as floppy as a baby on my hip while I'm crouched down without falling on my ass. Finally we get him in but he is still crying and screaming and disrupting circle time. Ainsley has to be suctioned because of all the jostling and she throws up. Carrying my sick child and a cup of vomit (thankfully just a little this time) I sit in the corner and cry along with Adrian who is REALLY sad because on top of not getting to do the bubbles and getting in trouble he's now missed hearing the story at circle time and sharing the book he brought from home. I put my arm around his shoulder to comfort myself as much as him. I wonder if things will ever be the way that they were before...Ainsley. Its hard to say that because I love her. Even though things are so much easier than they were that first year when they go wrong it still all feels like too much. I hope that someday things really will be easier, like they were before, still hard like parenting is but not like this where I feel like every day is a test that I'm failing.
Why am I thinking about vomit? Because Ainsley's been sick and thrown up a few times in the last couple days and a few people who were there at the time have been surprised at how I "know" when it's going to happen, so its been on my mind. Not that this is new. I can't tell you how many therapists, doctors and regular people have asked me how I know. And it IS uncanny that I can tell. It can be the look on her face, the way she moves her tongue, the way she coughs, or even the way she holds her breath. 5% of the time she gets sick when I think she won't, another 5% of the time she doesn't get sick when I think she will, but 90% of the time I know. How do I know? Is it mommy intuition? Or is it experience? Steve is not a very good judge and he's seen her throw up countless times. I was trying to figure out how many hours of my life have I spent now watching her to see what's going to happen. How many hours suctioning and praying that it wouldn't cause her to vomit? I'd estimate it's about 4,000 times I've suctioned her and watched to see if it was going to cause her to vomit. I'd estimate about 800 times I've seen her throw up. It's a little bit like having a child with the flu that never goes away. One of the moms on the trach forum was saying last week how she lost it over her son vomiting after she's worked so hard to give him a feeding, and I SO totally could relate.
I can't explain what its like to see your child explode like a volcano and vomit their entire feeding up into their face and watch their panic as the thickened curdled milk covers their eyes, nose and spills into their trach like lava. Seeing them thrash back and forth trying not to drown in it. It all happens within a second or two but like a car crash everything seems to be in slow motion and last for minutes. Even if Ainsley never threw up ever again I know I will never get that image out of my head. The feelings of being totally helpless and frustrated. The despair that on a bad day hits you in seconds that can be so overpowering that you scream before you can think twice about whether the neighbors can hear you. I don't think you could get it unless you have a medically complex child that is a chronic vomiter.
So when it seems that Ainsley has stopped vomiting you can imagine how thrilled I am. But I'm hesitant and afraid to do anything differently should it return. I'm a prisoner to the threat of vomit. And so the last few days have brought back all the bad memories.
Ainsley had an unexpected low-grade fever Wednesday and I suspected an ear infection, since no one else in the family was sick. I scheduled a doctor appointment late Wednesday for the following morning. In the morning it became clear that despite being virtually isolated she had somehow caught a cold but it was too late to cancel the appointment so I took her in anyway. The right ear was a little red but we held off on antibiotics, and her lungs were clear. Later in the day she still had a low-grade fever but by night her heart rate was up in the 190 range and at 2am her temperature hit 103.3 on Motrin. Even after I spent half an hour sponging her head with a wet washcloth, put her on oxygen to try to bring up her sats and bring her heartrate down she still woke up needed suctioning a few times after that. It was already 1am when I went to bed because I was working on a photo project I'd planning on bringing to the preschool so I didn't get much sleep. I'd committed to work at the preschool and was even looking forward to it. Every few weeks I think "how bad can it be" and work up the nerve to give it another try. Every time I'm reduced to a blubbery pile of tears at some point in the day but I guess I'm slow to learn. At least today it was at the end of the day not before I even left the house. Since at 8:30 her temperature was totally normal I got ready to go but once she woke up it started to climb again. Still, I figured she can sleep while I filled in as a working parent and she'll just lay in the stroller or on the blanket so she shouldn't get anyone sick. The day goes pretty well. I'm even able to juggle taking photos for the school in between suctioning and tube feeding. Fine, that is, until Adrian refuses to join the class in the lunchroom because he couldn't sit next to his best friend. I'm trying to take pictures of lunch for the teacher and frustrated that my son is causing a scene. Eventually that is resolved when a spot opens up and he can sit where he wanted. Then I'm inside to clean the bathrooms and floors (chalk pounding day) and suctioning Ainsley after she was awoken from napping in the stroller to find she's coughed so much today that she's started to bleed(trace amounts) when the teacher comes in to tell me Adrian is now refusing to come in from the playground. Apparently because he wanted to blow bubbles with the giant bubble wand right when they were being put away. I pick up Ainsley because she can't be left alone and sling the suction machine over my shoulder and run outside to try to help get Adrian in. He's screaming, crying and running from me. Whichever way I run he runs the opposite and carrying Ainsley I can't possibly catch him so all I can do is yell to try to get him to come to me so we can talk. Then he can't even hear a word I say because he is screaming in my ear to leave him alone. All the while I am desperately trying to calm down my four year old who is physically resisting me while balancing my child who is as big as a two year old and as floppy as a baby on my hip while I'm crouched down without falling on my ass. Finally we get him in but he is still crying and screaming and disrupting circle time. Ainsley has to be suctioned because of all the jostling and she throws up. Carrying my sick child and a cup of vomit (thankfully just a little this time) I sit in the corner and cry along with Adrian who is REALLY sad because on top of not getting to do the bubbles and getting in trouble he's now missed hearing the story at circle time and sharing the book he brought from home. I put my arm around his shoulder to comfort myself as much as him. I wonder if things will ever be the way that they were before...Ainsley. Its hard to say that because I love her. Even though things are so much easier than they were that first year when they go wrong it still all feels like too much. I hope that someday things really will be easier, like they were before, still hard like parenting is but not like this where I feel like every day is a test that I'm failing.
Apr 30, 2008
Ainsley Fell Off the Bed
Well last night we hit another milestone, literally, on the floor. It's not normally something you're happy about but in a way we are. Finally after a year and a half its no longer safe to lay Ainsley on the bed. Last night I layed her on her tummy across the foot of Evie's bed while I tucked her into bed. 10 seconds after I sat down I hear a loud thud on the floor. She had pushed herself up into a frog sit and fell over backward onto her back onto the floor. Luckily Evie's bed is pretty low. Still, she was pretty shook up. This is the first time she has ever fallen over and hurt herself. Even when she sits there have always been pillows to cushion her fall so she's come to expect to be safe and thinks its fun to fall over, which is not really good. So maybe its a good thing it happened. And now we know so we'll put her on the floor during goodnight time.
Apr 29, 2008
Another Death of a Trach Child
You may recall several weeks ago I wrote about a boy from our trach support group who passed away unexpectedly in the night while recovering from the flu. A couple of weeks ago another boy passed away while the parents drove him to the hospital after he had some unexplained stomach pain. And yesterday a third mom from our trach forum wrote in to say that her dear friends son passed away unexpectedly in his sleep. He too had a trach and CP just like her daughter. My heart goes out to these grieving families. And I can't help but be shocked and a little scared by these unexpected deaths. Having a child with an artificial airway is risky, we've always known that, but we've come to feel pretty safe over time. The mom from the trach forum reminded us to hug our babies extra tight last night. And its a good reminder to us all to appreciate our loved ones while they are here with us. And to be thankful for our good health every day. Whether you have a trach or not.
Apr 24, 2008
Impedance Probe Results Are In
We got the call from Cincinnati yesterday with the impedance probe test details I requested. While her acid levels were normal and there was no outward evidence of reflux (pain or discomfort, spit-up, vomiting etc.) the probe measured that there was 157 episodes of reflux during the 18 hour test. 39 times the stomach contents made it up to the upper part of the esophagus or maybe even the airway. 85% of the time it correlated with coughing. Probably another 5-10% of the time I couldn't record the coughing quick enough on the machine. So basically the coughing and the reflux happen together almost all of the time. Which is pretty much what I've been saying all along.
After discussing it at length with friends on the trach forum and with Steve after dinner we've come to some conclusions about what this information might tell us and where we go from here.
Here's the question: Are the secretions irritating her and causing her to cough, causing the pressure in the stomach to force up the food, IE. reflux? Or, is she coughing because reflux is irritating her, and then as a result she coughs up secretions. It's the chicken or the egg thing. Why does it matter? Because it would really help to know what is causing the problem to help decide how to treat it. But unfortunately there isn't really any way to know. Steve and I agree we think it's most likely that the coughing is the real problem. Steve's logic is that if the reflux was causing the coughing there would be more incidents of reflux happening that didn't trigger a cough. Makes sense to me. I've requested the full data from the test so I can analyze it closer but it will take 4-6 weeks to arrive.
The other thing is her esophagus looks beautiful. There is no damage at all to it from the reflux so one might question why if the reflux is causing the airway swelling there are no signs of damage to the esophagus. That's a damn good question. And since there is no damage to the esophagus there is no reason to treat the reflux with anything more than the reflux medicine (Prevacid Solutab 15mg 1x day) that she's already on UNLESS we are hoping it will resolve her airway problem.
The gastroenterologist recommends doing nothing and hoping she outgrows it. But IF we are eagerly pursuing decannulation then he says she should get a nissen fundoplication or she may aspirate stomach content. They would make an incision and wrap part of the stomach around the esophagus to keep the stomach contents from going up the esophagus. Here's a link to more info about this surgery: http://en.wikipedia.org/wiki/Nissen_fundoplication Ainsley has a small hiatal hernia http://en.wikipedia.org/wiki/Hiatus_hernia in addition to the reflux which I believe was also caused by all the coughing which in turn makes it more likely that she would reflux. There are the obvious surgical risks, but also there can be problems associated with them such as reduced stomach capacity, retching, gastric dumping syndrome, or failure (it comes loose and the surgery has to be repeated). So that is why he is not recommending she get one.
The airway clinic thinks it may be the answer to her problems but doesn't know for sure and also cautions that there can be undesirable side effects.
Where does this leave us? Uncertain since the surgery may or may not fix the airway swelling. We've decided to try a few other things before surgery. We're going to try giving her some over the counter pain medicine and allergy (even though she doesn't have allergies) meds to see if it can reduce the amount of coughing and secretions she has. My theory is that she coughs because her airway is uncomfortable like when you have cold and have been coughing a lot. Her vocal cords are touching because of the swelling which makes them susceptible to irritation from everything from coughing, vocalizing, aspiration etc. The more she coughs the more irritated they are and the more secretions the swollen tissue creates. So long as the cords are touching they are highly vulnerable to irritation. This causes a viscous cycle. The hope is the meds might help break the cycle. This is all just my theory and may not work at all.
So our other thought is this: We've had pretty good success on the pureed diet. The vomiting virtually stopped. So if the meds don't work we will thicken her tube feedings even more in the hope that will help keep it in the stomach. We'll have to administer it via syringe instead of gravity because it'll be too thick otherwise. And we are also going to try to eliminate the night time continuous drip feedings so she's not getting thin liquids while laying down. But the doctors are NOT recommending that. They say it usually helps to go with a continuous drip day and night. We tried that when she was a baby and it actually seemed worse. Perhaps because there was always something in the stomach to be vomited out. It will be tricky to make sure she gets enough calories during the day but got her calorie, fat, protein, water needs from the dietitian today. Since there is no outward evidence of reflux the only way we'll know if this is helping is if we start to hear more sounds from Ainsley because as the swelling decreases it will allow more air through the vocal cords and therefore we'll hear more sound.
If neither of those things work then we'll probably be looking for the best surgeon to perform the surgery here in Seattle.
After discussing it at length with friends on the trach forum and with Steve after dinner we've come to some conclusions about what this information might tell us and where we go from here.
Here's the question: Are the secretions irritating her and causing her to cough, causing the pressure in the stomach to force up the food, IE. reflux? Or, is she coughing because reflux is irritating her, and then as a result she coughs up secretions. It's the chicken or the egg thing. Why does it matter? Because it would really help to know what is causing the problem to help decide how to treat it. But unfortunately there isn't really any way to know. Steve and I agree we think it's most likely that the coughing is the real problem. Steve's logic is that if the reflux was causing the coughing there would be more incidents of reflux happening that didn't trigger a cough. Makes sense to me. I've requested the full data from the test so I can analyze it closer but it will take 4-6 weeks to arrive.
The other thing is her esophagus looks beautiful. There is no damage at all to it from the reflux so one might question why if the reflux is causing the airway swelling there are no signs of damage to the esophagus. That's a damn good question. And since there is no damage to the esophagus there is no reason to treat the reflux with anything more than the reflux medicine (Prevacid Solutab 15mg 1x day) that she's already on UNLESS we are hoping it will resolve her airway problem.
The gastroenterologist recommends doing nothing and hoping she outgrows it. But IF we are eagerly pursuing decannulation then he says she should get a nissen fundoplication or she may aspirate stomach content. They would make an incision and wrap part of the stomach around the esophagus to keep the stomach contents from going up the esophagus. Here's a link to more info about this surgery: http://en.wikipedia.org/wiki/Nissen_fundoplication Ainsley has a small hiatal hernia http://en.wikipedia.org/wiki/Hiatus_hernia in addition to the reflux which I believe was also caused by all the coughing which in turn makes it more likely that she would reflux. There are the obvious surgical risks, but also there can be problems associated with them such as reduced stomach capacity, retching, gastric dumping syndrome, or failure (it comes loose and the surgery has to be repeated). So that is why he is not recommending she get one.
The airway clinic thinks it may be the answer to her problems but doesn't know for sure and also cautions that there can be undesirable side effects.
Where does this leave us? Uncertain since the surgery may or may not fix the airway swelling. We've decided to try a few other things before surgery. We're going to try giving her some over the counter pain medicine and allergy (even though she doesn't have allergies) meds to see if it can reduce the amount of coughing and secretions she has. My theory is that she coughs because her airway is uncomfortable like when you have cold and have been coughing a lot. Her vocal cords are touching because of the swelling which makes them susceptible to irritation from everything from coughing, vocalizing, aspiration etc. The more she coughs the more irritated they are and the more secretions the swollen tissue creates. So long as the cords are touching they are highly vulnerable to irritation. This causes a viscous cycle. The hope is the meds might help break the cycle. This is all just my theory and may not work at all.
So our other thought is this: We've had pretty good success on the pureed diet. The vomiting virtually stopped. So if the meds don't work we will thicken her tube feedings even more in the hope that will help keep it in the stomach. We'll have to administer it via syringe instead of gravity because it'll be too thick otherwise. And we are also going to try to eliminate the night time continuous drip feedings so she's not getting thin liquids while laying down. But the doctors are NOT recommending that. They say it usually helps to go with a continuous drip day and night. We tried that when she was a baby and it actually seemed worse. Perhaps because there was always something in the stomach to be vomited out. It will be tricky to make sure she gets enough calories during the day but got her calorie, fat, protein, water needs from the dietitian today. Since there is no outward evidence of reflux the only way we'll know if this is helping is if we start to hear more sounds from Ainsley because as the swelling decreases it will allow more air through the vocal cords and therefore we'll hear more sound.
If neither of those things work then we'll probably be looking for the best surgeon to perform the surgery here in Seattle.
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