Waking in a strange place, groggy from too little sleep, I can't remember where I put my glasses. So bleary, groggy and frustrated, I begin to pat around; hoping I can find them with my hands rather than my feet. Disoriented, I am not sure where I am, but I know where Sam is. I don't need to see to find his beloved head and check that he is breathing and the tube is still in his nose.
He is okay. The world shifts into place. I remember that I carefully placed my glasses under the couch so I wouldn't step on them. Now I can see well enough to attach the monitor to his finger and check his heart rate and oxygen level. Yeah. He's okay.
I slept on a mat on the floor by the couch. Sam's sleeping on the couch, the oxygen tube still in his nose. I'm in my own living room. I remember Charley carefully not stepping on me as he went to work.
Time for tea and then I'll start his nebulizer treatments again. I have to give the first one before he wakes up in order to get enough in each day. He's not eating, I have to try to get him to eat something before 2. He takes his next pill at 4 and he can't have any milk products between 2 and 6. I never realized how large a percentage of the things he will eat are milk based - even Ensure!
Got a fabulous new cookbook called "I Can't Chew." It's full of nutrition advice and recipes for people with chewing and swallowing problems. But I'm too tired to read it. I'm too afraid I'll lose Sam before I have a chance to try all the recipes. I look at the cover and go back to the trashy novel. Or knit. I thank God for yarn and trashy novels and tea when Sam is sick.
Two nights ago, I was sure he was sick enough to be admitted. But, since I've been through this so often, I knew it was better to wait for the doctor's office to open than to call or visit the ER in the middle of the night. You wait in the comfort of your own home instead of in a cold, hard waiting room chair. But I couldn't sleep because I was so worried. So I started packing my overnight bag. At 8:45 I called the office, at 10 the doctor called me back. After listening to my experienced, coherent report, she said, "Well, it sounds like you have everything under control. I'll call in a prescription and, if he doesn't turn around in a few days, you should bring him in."
Under control? I wouldn't describe it that way. But it's a new day. I found my glasses without the aid of my sight. The tube which feeds air into Sam's lungs didn't get wrapped around his neck and strangle him in the night. I don't have to think about what to wear, I'll just grab something from the overnight bag still sitting on the chair. Himmat taught me how to make good strong Indian Chai recently. On the whole, it's going to be a good day.
Musings From a Life Transformed by Unconditional Love
Showing posts with label dysphagia. Show all posts
Showing posts with label dysphagia. Show all posts
Friday, March 23, 2012
Wednesday, March 02, 2011
Sam's Condition (just the bad stuff)
I had to write this for a social worker. It was hard. So I thought I'd post it, because it felt like a challenge like this should be memorialized - or something. Either I'm just feeling sorry for myself or else I'm really proud of my ability to spell arcane medical words.
Sam Forsberg is a 29 year old boy with the mental capacity of about an 18 month old. He is about 4 1/2 feet tall and, on a good day, weighs 80 pounds. If he goes too much below 75 pounds he gets sick from being too thin. He has aphasia (which means he can't figure out how to talk) and dysphasia (difficulty swallowing). He also has a very high arched palate which may be part of his swallowing difficulties. He has bi-lateral choroidal coloboma (which means a hole in the back of both of his eyes) and strabismus and nystagmus (which means his eyes wobble up, down and sideways). The last time we took him to the eye doctor, she said he also has some astigmatism. He has a certain degree of ataxia (which means he shakes or trembles a lot especially when tired.)
All of this is because something went wrong about a month before he was born. Maybe he had a stroke. He was born with brain damage in the back part of his brain. He can't walk because he has damage to his vestibular nerve and so he has very little sense of balance. He isn't very strong, tires easily and has very low muscle tone. He also doesn't have a very good temperature regulator, so I can't take him outside if the weather is too cold or too hot. He has asthma, so I am not supposed to take him outside on "ozone action days".
He can't chew, which means everything he eats must be pureed or mashed. According to the dentist, this means his teeth are MORE likely to decay than if he actually chewed, so I have to be very careful to brush his teeth often. If he swallows something too thin, he chokes and some of it goes into his lungs. If he swallows liquids that are too thick, he chokes and stuff goes up his nose. Sometimes things that he has swallowed half way come back up into his nose and then, we think, go back down into his lungs. He has very extensive nasal polyps because of this nasal regurgitation.
All of his life he has had a lot of congestion. No one is quite sure why. He doesn't seem to have any allergies, although he does have asthma because his lungs are so chronically full. His nose is always running and he often has huge amounts of mucus clogging his nose and throat. He had almost constant ear infections as a child. The muscle that is supposed to help his ears drain is either missing or non-functional because of his high palate. We lost track of how many different ear doctors tried to put tubes in his ears. (I can think of 5 off the top of my head) The tubes never lasted long. But his ear drums have been perforated so many times that he seems to have developed permanent holes in them now, so we don't have as many ear infections. This is good because he is resistant to some of the antibiotics and allergic to others because he's been on them so often. Now we try to avoid using antibiotics as much as possible. He usually gets pneumonia about once a year and we give him antibiotics for that.
About 6 years ago he had a very bad bout of pneumonia and had to be hospitalized. At that time we met Dr. Mutlu. He has been caring for Sam's lungs ever since. He discovered that Sam also has Central Sleep Apnea which causes his Co2 levels to rise. Sam is in compensated respiratory acidosis. This means his body is working overtime to compensate for the extra Co2 in his blood. If the Co2 rises too much, he dies. So bringing down the Co2 has become a central focus of our lives the last 6 years.
We tried for about a year and a half to get him to wear the bi-pap machine, but finally gave up because I wasn't getting any sleep and started to see snakes in the corner of the room! Instead, I keep a close watch on his blood oxygen level with a pulse oximeter. I try to keep it between 87 and 95. If it gets too low, I have an oxygen condenser at home and I can give him oxygen. It never gets too high naturally, but sometimes it can get too high with the oxygen condenser. If it gets too high, the sleep apnea gets worse and his Co2 levels rise.
He has always seemed to sleep best between the hours of about 4 am and 11 am. I used to dress him in his sleep and take him to the car to get him to school or program. He was always late. I would feed him in the car when he woke up. Dr. Mutlu said this should stop. It is vital that Sam sleep whenever he can. When he sleeps deeply, he breathes deeply and this is the best way to bring Co2 levels down. So we let him sleep. He often takes a nap in the afternoon as well. This means that he has been unable to attend Esperanza very often. When we have a very good day, I bring him to visit for a few hours from about noon to when they close at 2:15.
In addition to letting him sleep and preparing all his meals carefully so he won't choke or regurgitate, there are also his breathing treatments. I give him chest PT with a chest vibrator 2 or 3 times a day. This takes 30-45 minutes each time. I also give him a nasal irrigation twice a day and nebulizer 4 times a day with medications prescribed by Dr. Mutlu.
I have three recent examples of how necessary all this is. First: in December my husband had surgery for prostate cancer. He came home with a catheter and was very weak. I spent a great deal of time taking care of him. I skimped on Sam's treatments. Sam got pneumonia. Second: whenever I fail to keep all the food and sleep and treatments in balance, Sam is up all night whimpering. Third: When we went to see Dr. Mutlu on February 22 of this year, Sam's blood gasses were stable! After 6 years of rising blood levels, and all my efforts to slow the rate of rising, we have finally stabilized him! His blood levels are still much higher than normal, but this is a great victory.
So, in summary, a brief list of his many diagnoses would include: profound mental retardation, ataxic cerebral palsy, chronic hypercapnic respiratory failure, bronchiectasis, central sleep apnea, asthma, dysphasia and aphasia. There's probably a several more, but that's all I can think of at the moment. Dr. Mutlu speculates that he has Joubert's Syndrome. His small stature is due to failure to thrive in his first year.
Sam Forsberg is a 29 year old boy with the mental capacity of about an 18 month old. He is about 4 1/2 feet tall and, on a good day, weighs 80 pounds. If he goes too much below 75 pounds he gets sick from being too thin. He has aphasia (which means he can't figure out how to talk) and dysphasia (difficulty swallowing). He also has a very high arched palate which may be part of his swallowing difficulties. He has bi-lateral choroidal coloboma (which means a hole in the back of both of his eyes) and strabismus and nystagmus (which means his eyes wobble up, down and sideways). The last time we took him to the eye doctor, she said he also has some astigmatism. He has a certain degree of ataxia (which means he shakes or trembles a lot especially when tired.)
All of this is because something went wrong about a month before he was born. Maybe he had a stroke. He was born with brain damage in the back part of his brain. He can't walk because he has damage to his vestibular nerve and so he has very little sense of balance. He isn't very strong, tires easily and has very low muscle tone. He also doesn't have a very good temperature regulator, so I can't take him outside if the weather is too cold or too hot. He has asthma, so I am not supposed to take him outside on "ozone action days".
He can't chew, which means everything he eats must be pureed or mashed. According to the dentist, this means his teeth are MORE likely to decay than if he actually chewed, so I have to be very careful to brush his teeth often. If he swallows something too thin, he chokes and some of it goes into his lungs. If he swallows liquids that are too thick, he chokes and stuff goes up his nose. Sometimes things that he has swallowed half way come back up into his nose and then, we think, go back down into his lungs. He has very extensive nasal polyps because of this nasal regurgitation.
All of his life he has had a lot of congestion. No one is quite sure why. He doesn't seem to have any allergies, although he does have asthma because his lungs are so chronically full. His nose is always running and he often has huge amounts of mucus clogging his nose and throat. He had almost constant ear infections as a child. The muscle that is supposed to help his ears drain is either missing or non-functional because of his high palate. We lost track of how many different ear doctors tried to put tubes in his ears. (I can think of 5 off the top of my head) The tubes never lasted long. But his ear drums have been perforated so many times that he seems to have developed permanent holes in them now, so we don't have as many ear infections. This is good because he is resistant to some of the antibiotics and allergic to others because he's been on them so often. Now we try to avoid using antibiotics as much as possible. He usually gets pneumonia about once a year and we give him antibiotics for that.
About 6 years ago he had a very bad bout of pneumonia and had to be hospitalized. At that time we met Dr. Mutlu. He has been caring for Sam's lungs ever since. He discovered that Sam also has Central Sleep Apnea which causes his Co2 levels to rise. Sam is in compensated respiratory acidosis. This means his body is working overtime to compensate for the extra Co2 in his blood. If the Co2 rises too much, he dies. So bringing down the Co2 has become a central focus of our lives the last 6 years.
We tried for about a year and a half to get him to wear the bi-pap machine, but finally gave up because I wasn't getting any sleep and started to see snakes in the corner of the room! Instead, I keep a close watch on his blood oxygen level with a pulse oximeter. I try to keep it between 87 and 95. If it gets too low, I have an oxygen condenser at home and I can give him oxygen. It never gets too high naturally, but sometimes it can get too high with the oxygen condenser. If it gets too high, the sleep apnea gets worse and his Co2 levels rise.
He has always seemed to sleep best between the hours of about 4 am and 11 am. I used to dress him in his sleep and take him to the car to get him to school or program. He was always late. I would feed him in the car when he woke up. Dr. Mutlu said this should stop. It is vital that Sam sleep whenever he can. When he sleeps deeply, he breathes deeply and this is the best way to bring Co2 levels down. So we let him sleep. He often takes a nap in the afternoon as well. This means that he has been unable to attend Esperanza very often. When we have a very good day, I bring him to visit for a few hours from about noon to when they close at 2:15.
In addition to letting him sleep and preparing all his meals carefully so he won't choke or regurgitate, there are also his breathing treatments. I give him chest PT with a chest vibrator 2 or 3 times a day. This takes 30-45 minutes each time. I also give him a nasal irrigation twice a day and nebulizer 4 times a day with medications prescribed by Dr. Mutlu.
I have three recent examples of how necessary all this is. First: in December my husband had surgery for prostate cancer. He came home with a catheter and was very weak. I spent a great deal of time taking care of him. I skimped on Sam's treatments. Sam got pneumonia. Second: whenever I fail to keep all the food and sleep and treatments in balance, Sam is up all night whimpering. Third: When we went to see Dr. Mutlu on February 22 of this year, Sam's blood gasses were stable! After 6 years of rising blood levels, and all my efforts to slow the rate of rising, we have finally stabilized him! His blood levels are still much higher than normal, but this is a great victory.
So, in summary, a brief list of his many diagnoses would include: profound mental retardation, ataxic cerebral palsy, chronic hypercapnic respiratory failure, bronchiectasis, central sleep apnea, asthma, dysphasia and aphasia. There's probably a several more, but that's all I can think of at the moment. Dr. Mutlu speculates that he has Joubert's Syndrome. His small stature is due to failure to thrive in his first year.
Friday, February 18, 2011
Pureed Food Recipies
Sam's a "big boy" and doesn't like to eat baby food. He wants to eat whatever I'm eating. This is a bit of a problem because I like to chew and he can't. He has dyphasia (swallowing problems) on top of that. When he gets too much food in his mouth, or hoards food he can't chew in his palate, it produces an amazing amount of saliva which goes up his nose. When he swallows liquid that's too thick, it clogs his nose and he just about suffocates. We ordered him a milk shake once and I thought we'd lost him. Not going to repeat that experiment. He does like Wendy's Frosty with a spoon. If it's too thin, it comes out his nose when he swallows. Sometimes the food that is just right only goes half way down his throat and a couple of minutes later it comes out his nose. Sigh.
Numerous swallow studies have not really given us a solid picture of what is going on or how much this is related to his ever diminishing lung capacity, but it's a pretty safe bet that something that isn't supposed to be there is getting into his lungs and clogging them up.
So I have to feed him very carefully, but it has to be attractive, nutritious and taste good. Culinary challenge they don't often cover on the food network! One bonus: calories and fat are not an issue with this boy. I'm always trying to keep his weight UP.
Of course calories and fat are a huge issue for his mom who knows how to chew! So my grocery cart is a very peculiar mix of high and low fat stuff.
But over the years I've discovered a lot of things that work for Sam. Some things I can serve to everyone as is (which thrills him) and some things require some last minute adjustment for Sam, but still are essentially the same thing we are eating. Sadly, most of the time he just has to put up with purreed whatever we are eating because I just don't have the time or energy to make it special. But I try to make him food he enjoys.
If I'm having a sandwich for lunch, I put the same stuff in the food processor, meat (or baked tofu or whatever), tomato, pickle (lettuce doesn't work very well). Then I add a goo factor. He likes Kraft Olive Oil reduced fat mayo or that Italian sandwich mix (gardineria?) or ketsup. (I like fancy mustard.) I put in one slice of bread and mix it for 30 seconds. It turns into a kind of sticky glop that holds it's shape. Then I make breadcrumbs (often toasted) of the other slice of bread. I roll tbsp bits of the filling glop in the bread crumbs and shape them into little rectangles. Voila! Finger sandwiches he can eat with me.
Really fluffy pancakes can be eaten just cut up (not pureed) if they have enough syrup on them. Cheese cake is the ideal desert. Cake is not very smart as it crumbles and chokes him, BUT if you add some cream or other liquid it becomes Dulce de Leche and very soggy. Perfect for Sam to consume with a spoon. Looks like cake but doesn't crumble! If you take Starbucks Classic Coffee Cake and pour mocha frappicino over it, you get something similar to Tiramisu! (Be sure to ask the Starbucks Barrista to give you the cake on a plate!)
I recently tried a Butternut Squash Soup with variations that was a huge success. I got the recipe from someone named Gabster Roolz on Cooks.com. Here's my variation:
1 chopped sweet onion
4 cloves garlic
tsp dried basil (or thyme)
Some fresh ginger (about 1/2 a thumb's worth)
Evoo
1 cubed butternut squash
1 C chicken stock
3 C water
1 bay leaf
pepper
2 medium sweet potatoes
1 pt heavy whipping cream (NOT Whipped Cream)
You don't have to chop the garlic and ginger very much since it will all get pureed. Just peel them and chop coarsely. Saute onion, garlic, ginger and basil in the evoo (extra virgin olive oil). Add squash, stock, water, bay leaf, pepper and sweet potato. Boil 20 minutes. REMOVE BAY LEAF. Puree the rest. At the last minute add the cream. The whipping cream adds a lovely bulk to this soup and makes it exactly the right texture for proper swallowing. BIG hit.
The chef Simply Ming says that heavy whipping cream is different from heavy cream because they add something to it to make it whip up better. I don't know but I did love the way the heavy whipping cream bulked up the puree and made it gorgeous. Of course, I suppose I should have the soup without the cream and just add it to Sam's portion...
Here's another thing, I've been reading labels and Carnation Breakfast Essentials has pretty much the same nutrition as Ensure or Boost. It also tastes a LOT better and is MUCH cheaper. You have to add a bit of Thicken or Thick-it to make it the right consistency, but it's still cheaper. Sam consumes 3 or 4 nutrition drinks a day so this is really good news.
Numerous swallow studies have not really given us a solid picture of what is going on or how much this is related to his ever diminishing lung capacity, but it's a pretty safe bet that something that isn't supposed to be there is getting into his lungs and clogging them up.
So I have to feed him very carefully, but it has to be attractive, nutritious and taste good. Culinary challenge they don't often cover on the food network! One bonus: calories and fat are not an issue with this boy. I'm always trying to keep his weight UP.
Of course calories and fat are a huge issue for his mom who knows how to chew! So my grocery cart is a very peculiar mix of high and low fat stuff.
But over the years I've discovered a lot of things that work for Sam. Some things I can serve to everyone as is (which thrills him) and some things require some last minute adjustment for Sam, but still are essentially the same thing we are eating. Sadly, most of the time he just has to put up with purreed whatever we are eating because I just don't have the time or energy to make it special. But I try to make him food he enjoys.
If I'm having a sandwich for lunch, I put the same stuff in the food processor, meat (or baked tofu or whatever), tomato, pickle (lettuce doesn't work very well). Then I add a goo factor. He likes Kraft Olive Oil reduced fat mayo or that Italian sandwich mix (gardineria?) or ketsup. (I like fancy mustard.) I put in one slice of bread and mix it for 30 seconds. It turns into a kind of sticky glop that holds it's shape. Then I make breadcrumbs (often toasted) of the other slice of bread. I roll tbsp bits of the filling glop in the bread crumbs and shape them into little rectangles. Voila! Finger sandwiches he can eat with me.
Really fluffy pancakes can be eaten just cut up (not pureed) if they have enough syrup on them. Cheese cake is the ideal desert. Cake is not very smart as it crumbles and chokes him, BUT if you add some cream or other liquid it becomes Dulce de Leche and very soggy. Perfect for Sam to consume with a spoon. Looks like cake but doesn't crumble! If you take Starbucks Classic Coffee Cake and pour mocha frappicino over it, you get something similar to Tiramisu! (Be sure to ask the Starbucks Barrista to give you the cake on a plate!)
I recently tried a Butternut Squash Soup with variations that was a huge success. I got the recipe from someone named Gabster Roolz on Cooks.com. Here's my variation:
1 chopped sweet onion
4 cloves garlic
tsp dried basil (or thyme)
Some fresh ginger (about 1/2 a thumb's worth)
Evoo
1 cubed butternut squash
1 C chicken stock
3 C water
1 bay leaf
pepper
2 medium sweet potatoes
1 pt heavy whipping cream (NOT Whipped Cream)
You don't have to chop the garlic and ginger very much since it will all get pureed. Just peel them and chop coarsely. Saute onion, garlic, ginger and basil in the evoo (extra virgin olive oil). Add squash, stock, water, bay leaf, pepper and sweet potato. Boil 20 minutes. REMOVE BAY LEAF. Puree the rest. At the last minute add the cream. The whipping cream adds a lovely bulk to this soup and makes it exactly the right texture for proper swallowing. BIG hit.
The chef Simply Ming says that heavy whipping cream is different from heavy cream because they add something to it to make it whip up better. I don't know but I did love the way the heavy whipping cream bulked up the puree and made it gorgeous. Of course, I suppose I should have the soup without the cream and just add it to Sam's portion...
Here's another thing, I've been reading labels and Carnation Breakfast Essentials has pretty much the same nutrition as Ensure or Boost. It also tastes a LOT better and is MUCH cheaper. You have to add a bit of Thicken or Thick-it to make it the right consistency, but it's still cheaper. Sam consumes 3 or 4 nutrition drinks a day so this is really good news.
Friday, September 24, 2010
Bird Talk
Sam and I took the birds to their annual physical this week. They were quite nervous and the Cockatiel was very mad that I couldn't find his travel cage. He loves to look out the car window as we drive. Instead I had to put him in a cardboard box. The Parrot went into her travel cage very easily, but she doesn't like riding in the car. We made it okay and, once in the exam room, I let them both out.
There we sat waiting for the doctor. The Parrot on my left shoulder reminding me what a pretty bird she is and murmuring bird jokes in my ear. The Cockatiel on my right shoulder alternating between ignoring me and hiding under my chin. And Sam sitting with his vibrating tooth brush and laughing at us.
It was a perfect moment. All four of us chatting away together and enjoying each other's company.
It struck me that two of the members of this conversation are completely non-verbal and the third (the Parrot) doesn't really have much to say for herself beyond "Hello" and "Pretty Bird."
That makes me the only one of the four of us who thinks talking is an essential part of life. I REALLY like talking and thinking! My mother likes to say that I came out of the womb talking.
Yet I'm sitting in a vet's office having a stimulating conversation with three of the most significant personalities in my life. Charley is a great person to talk to, but he's gone all day and when he comes home he'd rather take a nap or play his instruments. I mostly talk to these three. And they are happy to listen to me babble.
"Oh what a noble mind is here o'er thrown," I thought. "I can feel my brain shrinking." Still, it was a perfect moment. We were all three having such a good time together.
Maybe words are not so great after all... No. They're still pretty terrific.
There we sat waiting for the doctor. The Parrot on my left shoulder reminding me what a pretty bird she is and murmuring bird jokes in my ear. The Cockatiel on my right shoulder alternating between ignoring me and hiding under my chin. And Sam sitting with his vibrating tooth brush and laughing at us.
It was a perfect moment. All four of us chatting away together and enjoying each other's company.
It struck me that two of the members of this conversation are completely non-verbal and the third (the Parrot) doesn't really have much to say for herself beyond "Hello" and "Pretty Bird."
That makes me the only one of the four of us who thinks talking is an essential part of life. I REALLY like talking and thinking! My mother likes to say that I came out of the womb talking.
Yet I'm sitting in a vet's office having a stimulating conversation with three of the most significant personalities in my life. Charley is a great person to talk to, but he's gone all day and when he comes home he'd rather take a nap or play his instruments. I mostly talk to these three. And they are happy to listen to me babble.
"Oh what a noble mind is here o'er thrown," I thought. "I can feel my brain shrinking." Still, it was a perfect moment. We were all three having such a good time together.
Maybe words are not so great after all... No. They're still pretty terrific.
Wednesday, September 16, 2009
Dysphagia
It's always a challenge to figure out what to feed Sam. He doesn't chew and he has all these aspiration issues. Food goes up his nose and down into his lungs if we aren't very careful. So I puree everything and thicken liquids. But he doesn't like food that looks different from everyone else's or is just plain grey and no fun.
Tonight we had Panda Express. You get two entrees and one side per person. So that makes 6 different entrees. I split them up so we each had a bit of each of these. I ordered one side of rice and two steamed vegetables. For Sam, I made a big platter with steamed rice in the center. Then all around the outside I had a little bit of all the different things we had. I ground them all separately and spooned them over the rice. It looked very fancy and delicious. Each entree had a little bit different color.
When something is too dry, I add a little bit of half and half and it gets nice and smooth. Calories are not his issue...
He was very interested and happy to eat with us!
Tonight we had Panda Express. You get two entrees and one side per person. So that makes 6 different entrees. I split them up so we each had a bit of each of these. I ordered one side of rice and two steamed vegetables. For Sam, I made a big platter with steamed rice in the center. Then all around the outside I had a little bit of all the different things we had. I ground them all separately and spooned them over the rice. It looked very fancy and delicious. Each entree had a little bit different color.
When something is too dry, I add a little bit of half and half and it gets nice and smooth. Calories are not his issue...
He was very interested and happy to eat with us!
Subscribe to:
Posts (Atom)