Well, it has been a little over a year since my last blog post. We have had another baby! Kat is a simply awesome baby, and a very welcome addition to the clan. She is about 3 months old now, and just a chubby little princess. Getting her our of the hospital after she was born was....hard. I might blog about that ordeal at a different date.
This week Taz has a VFSS to see if he is still aspirating fluids. If he passes the test this week, he can drink liquids that aren't slime. I can't communicate just how much I want him to pass this VFSS. I try not to think about it because I don't want to get my hopes up. His RAD has been doing really well lately, and he has been pretty healthy respiratory-wise for the last 6 months.
Taz had a focal seizure about 2 months ago. He was eating some veggies, and suddenly he started staring at the ceiling, unresponsive. He was eating some broccoli and I think he had the seizure while he was swallowing, and started choking. He started to turn blue and appeared to not be breathing. I did the various methods to try and help him expel whatever he was choking on. He kind of coughed, and appeared to be very tired, but OK. We called 911, and they believed it was just a choking episode and told us he was fine. The mom-stinct in me kicked in, and I decided that it was likely more than just choking and had him checked out. The ER thought it was more than choking, and referred us to neurology. The neurologist had us do a sleep deprived EEG last month, the results came back "normal" or within the range of normal. The next step is a MRI under general anesthesia I think. Although, if his swallow study is normal that could possibly change the plan- I really don't know.
Monday, July 6, 2015
Tuesday, May 13, 2014
Second VFSS of 2014
Taz is a character. He knows precisely what he wants, and he knows precisely what he doesn't want. Today he did not want to drink from an open cup. There was no amount of cajoling or bribery that would get him to play along. I really wanted to test him with an open cup today. Soon Nash will be learning to drink from an open cup, and I want Taz to be able to drink from an open cup too. Most kids do some coughing and sputtering when they are learning to drink from a cup, that is perfectly normal. The problem is that Taz has silent aspiration. By the time he is coughing and sputtering, he has aspirated a large amount of fluid. We just can't risk teaching him to drink from an open cup when we don't know if the coughing and sputtering is normal, or if it is frank aspiration.
A VFSS is a swallowing study of various thicknesses using barium to see how Taz swallows the various consistencies. He still has frank aspiration before the swallow of thin fluids, and he still aspirates nectar thick fluids. Today there were 3 bottles with three different consistencies of barium; thin, nectar, and honey thick. They like to get a couple swallows of one consistency and then move on to another, and so on and so forth. We have to take Taz in hungry or he won't drink anything. Even when we take him in hungry, he isn't the most cooperative patient.
We tried to start him on an open cup, he absolutely wanted to have nothing to do with it. He saw the 3 bottles of barium, and he just wanted to get going with those instead.
Taz absolutely hates switching between bottles. He starts to get into one bottle, and then they want to yank that one and give him another. He becomes very agitated and uncooperative after a certain amount of bottle switching. They don't want him to drink a ton of barium, so one of the tests has been almost impossible until today; they need to test fatigue in swallowing. For many patients with dysphagia, they tend to do an excellent job of swallowing in the beginning of drinking, but they can start to aspirate after drinking for awhile. Taz likes to drink 8-10 oz at a time, so we have needed to test his fatigue aspiration on honey thick fluids. Today we were able to get a couple isolated swallows after he drank a couple ounces of his Elecare. He was very upset about not being able to drink an entire 10 oz bottle of cherry-barium, so that was the best we could get.
Unfortunately, we are rapidly moving in the direction of an idiopathic diagnosis. The SLP and ENT have absolutely no clue why he is aspirating. He has had quite a number of swallow studies, he even had exploratory surgery and a filler applied. No one has any idea why he aspirates, and no one can tell us if he can/will grow out of this. We simply have no idea why he aspirates fluids, so there isn't a timeline for when he will stop.
The good news is that his aspiration isn't worsening, and we were able to see a couple swallows after he had been drinking for awhile. The techs were highly amused by Taz; he insisted upon playing with his belly button while performing the swallow study. He wouldn't calm during the test until I freed his belly from the confines of his outfit.
The next steps are a clinical evaluation of Taz by an SLP. We also need to do a repeat swallow study sometime in the future when we won't offer him anything other than an open cup. If he has the option to drink from a bottle, he prefers to do that. He could be refusing because on some level it he knows that he is aspirating, and it feels better to drink from a bottle? Or he could just refuse because he is 2, and 2 year olds like to be independent. During the VFSS he wouldn't drink anything if I handed it to him, I had to set it next to him so that he could pick it up himself. We will also look into a full evaluation to see how on track he is developmentally. Which will be challenging, because he is far ahead in some areas, and slightly behind (but still in the range of normal) in other areas. We spoke about feeding therapy, but because his aspiration is silent, and there isn't really a clear reason for his issues, it would be difficult to know if he is really being taught to swallow properly. It isn't realistic to do his feeding therapies with a VFSS, so feeding therapy isn't really an option right now.
The hardest part of today what the look on Taz's face when we entered the hospital. The look on his face spoke of a weariness and fear that a 2 year old simply shouldn't have. He knew exactly what to do during the swallow study, he knew how to get his arm band on as a patient. He is very much a professional patient at this point. There is a great deal of pride that he is so intelligent, and a larger amount of sadness that he knows these things at all.
To ease my maternal guilt, I bought him a balloon with superheroes on it. Tonight we are having GF burgers, and strawberry lemonade. I will focus on the next steps later. Right now, we just need to keep moving forward looking for possible answers. Maybe we won't find any, but I have to at least try.
We tried to start him on an open cup, he absolutely wanted to have nothing to do with it. He saw the 3 bottles of barium, and he just wanted to get going with those instead.
Taz absolutely hates switching between bottles. He starts to get into one bottle, and then they want to yank that one and give him another. He becomes very agitated and uncooperative after a certain amount of bottle switching. They don't want him to drink a ton of barium, so one of the tests has been almost impossible until today; they need to test fatigue in swallowing. For many patients with dysphagia, they tend to do an excellent job of swallowing in the beginning of drinking, but they can start to aspirate after drinking for awhile. Taz likes to drink 8-10 oz at a time, so we have needed to test his fatigue aspiration on honey thick fluids. Today we were able to get a couple isolated swallows after he drank a couple ounces of his Elecare. He was very upset about not being able to drink an entire 10 oz bottle of cherry-barium, so that was the best we could get.
Unfortunately, we are rapidly moving in the direction of an idiopathic diagnosis. The SLP and ENT have absolutely no clue why he is aspirating. He has had quite a number of swallow studies, he even had exploratory surgery and a filler applied. No one has any idea why he aspirates, and no one can tell us if he can/will grow out of this. We simply have no idea why he aspirates fluids, so there isn't a timeline for when he will stop.
The good news is that his aspiration isn't worsening, and we were able to see a couple swallows after he had been drinking for awhile. The techs were highly amused by Taz; he insisted upon playing with his belly button while performing the swallow study. He wouldn't calm during the test until I freed his belly from the confines of his outfit.
The next steps are a clinical evaluation of Taz by an SLP. We also need to do a repeat swallow study sometime in the future when we won't offer him anything other than an open cup. If he has the option to drink from a bottle, he prefers to do that. He could be refusing because on some level it he knows that he is aspirating, and it feels better to drink from a bottle? Or he could just refuse because he is 2, and 2 year olds like to be independent. During the VFSS he wouldn't drink anything if I handed it to him, I had to set it next to him so that he could pick it up himself. We will also look into a full evaluation to see how on track he is developmentally. Which will be challenging, because he is far ahead in some areas, and slightly behind (but still in the range of normal) in other areas. We spoke about feeding therapy, but because his aspiration is silent, and there isn't really a clear reason for his issues, it would be difficult to know if he is really being taught to swallow properly. It isn't realistic to do his feeding therapies with a VFSS, so feeding therapy isn't really an option right now.
The hardest part of today what the look on Taz's face when we entered the hospital. The look on his face spoke of a weariness and fear that a 2 year old simply shouldn't have. He knew exactly what to do during the swallow study, he knew how to get his arm band on as a patient. He is very much a professional patient at this point. There is a great deal of pride that he is so intelligent, and a larger amount of sadness that he knows these things at all.
To ease my maternal guilt, I bought him a balloon with superheroes on it. Tonight we are having GF burgers, and strawberry lemonade. I will focus on the next steps later. Right now, we just need to keep moving forward looking for possible answers. Maybe we won't find any, but I have to at least try.
Saturday, May 10, 2014
Happiness versus contentment
Today, I am going to write about happiness versus contentment. I think society often wants to look upon mothers and see a maternal joy and happiness. When they don't see it, they often find the mother lacking. On the flip side, if they see a happy mother, they assume that there is something fundamentally wrong with the mother.
First I have to give you a little background on our little family. My husband and I have been together for 20 years. We have weathered 2 deployments, and we have 3 boisterous boys, and 3 vivacious girls.
Our eldest daughter was born in 2001, she is a bookworm that is blossoming into womanhood.
Our second daughter was born in 2005 (right after our first deployment). She is a child that, on the surface, is very quiet and girly. Underneath that exterior is a spicy meatball of fun.
Our eldest son was born in 2007. He is all boy, all the time. There is also a kindness of heart, and sensitivity of spirit, that is awe inspiring in him.
Our youngest daughter was born in 2009 during our second deployment. She is sweet, and wise beyond her years. We constantly have to remind people that she is much younger than she seems.
Our second son Taz has had a rough road health-wise since being born a month early in 2012. He has dysphagia with frank aspiration before the swallow. He also has RAD, but it is unknown if this is related to his dysphagia or if it is related to lung damage from his fight with RSV at 5 weeks of age. He ended being the reason for my first ambulance ride. The paramedics were freaked out, which freaked me out too. He was intubated for about a week. It is believed that this life threatening illness at such an early age triggered his celiac disease. Taz hasn't grown out of his dysphagia, and at this point the question isn't when he will grow out of his dysphagia, it is if he will outgrow his dysphagia. At one year of age, he was barely 12 pounds. He is on prescription formula to help him maintain his current 25 lbs of toddler.
Our youngest son was born just 14 months after Taz in 2013. He is a massive lunk of love, and best friends with Taz. They play, fight, and cuddle all day.
Our life has been full of more downs than ups lately. The struggle to keep Taz healthy is constant. We have bags packed for a trip to the ER (and possible admission) all the time.
I have my days of feeling depressed, but in general I am fairly happy. Society often tells us that we should always be happy, that we should find our bliss and pursue it. I've tried to chase happiness, I ended up more depressed because I could never really achieve happiness. If I tried to be happy while Taz is screaming in pain, because he is so dehydrated after playing at the park-I couldn't be happy. In that moment I am in maternal agony. In that moment, I feel the crushing weight of the health conditions of my child, and I feel completely and utterly helpless.
Instead I strive for contentment. In searching to be content, I can focus on the positives of the situation in retrospect; Taz had good fluid intake, but he didn't have good salt intake. So if we keep him well salted on hot and busy days, we can avoid the leg cramps from dehydration that caused him so much pain. There is absolutely nothing that I can be happy about in the situation. I can't be happy that our 2 year old was experiencing leg cramps from dehydration. If I tried to be happy, I would become increasingly depressed.
Our youngest daughter was born during my husband's last deployment. I was a single mother of 4 children (3 age 4 and under) for months before my husband returned. When he returned, he faced the many demons of deployment. The price that those that serve is much higher than the time that they spend overseas. That price is shared by the family in some form or another, no matter how hard the man returning tries not to share it. I would actually posit that by trying to shoulder it themselves, they make the burden heavier for everyone. That is a topic to explore later, not right now. I fully expected to have postpartum depression after our daughter was born. I really thought that I would become depressed, and non-functional after she was born. I very nearly decided to take anti-depressants for PPD because I thought that because I should be depressed, that I must be depressed. Instead of sadness, I felt so happy that it scared me. I honestly wondered if my happiness was really masked depression. I had no real reason to be happy; I was a single mother and my husband was in a war zone.
In retrospect, I believe I was happy because I lived in the moment and tried to look at every challenge from the future. My house was an absolute disaster. Our eldest son was constantly misbehaving by dumping this or that all over the floor, or tracking butter thru the house. He behaved like a 2 year old boy that missed his dad. I realized that I could crack the whip for the whole deployment, or I could take that moment and realize it didn't ultimately matter. That butter tracked across the carpet would be a funny story in retrospect (I was on the phone with my husband overseas when he did it). I decided to take pictures, and have the kids clean up afterward.
I could have raged to have everything in perfect order. I am positive that our kids would have fallen in line, and the external would have been orderly and nice. My life would have been smooth on the surface, and my interior life would have been fitful and disturbed. The world would have seen the perfect exterior, and I could keep the imperfect interior as my own little secret. Instead, I had shredded paper all over my house for months; but I had kids that were happy even though they missed their dad, and I found a happiness in motherhood that I didn't know was possible.
Life is full of ups and downs. We don't always have a guarantee of smooth sailing on the horizon. I don't know if our lives will ever be calm and easy. I have learned that seeking happiness isn't the goal. Happiness is fleeting and conditional. You can't really be happy when everything is falling down around you. You can find contentment in the moments between the chaos, or moments during the chaos.
For some people, the highs and lows of mood have nothing to do with life circumstances, and everything to do with their personal body chemistry. I don't discount that mood disorders exist. That isn't what I speak about when I say that contentment rather than happiness should be the goal. The truth is that sometimes we are depressed because we have very valid reasons for being depressed. If we can have valid reasons for being joyous, we can certainly have reasons for being depressed. If we have valid reasons for being depressed, acknowledging those reasons can help us travel thru the depression and look for the little flowers of contentment along the path.
I'm not perfect. I get depressed, I have days when everything is very hard. The days that I have to calm the very valid fears of big brother/sisters for their little brother are heartrending. I wish that I could lie and push all those fears away. I wish that I could say that when Taz is "x" age, he can go swimming and camping and play like a normal child. I can't say anything even close to that, because we honestly don't know. But I can be content in the moments that we have now. In finding those moments of contentment, I have found a happiness that I never imagined possible.
First I have to give you a little background on our little family. My husband and I have been together for 20 years. We have weathered 2 deployments, and we have 3 boisterous boys, and 3 vivacious girls.
Our eldest daughter was born in 2001, she is a bookworm that is blossoming into womanhood.
Our second daughter was born in 2005 (right after our first deployment). She is a child that, on the surface, is very quiet and girly. Underneath that exterior is a spicy meatball of fun.
Our eldest son was born in 2007. He is all boy, all the time. There is also a kindness of heart, and sensitivity of spirit, that is awe inspiring in him.
Our youngest daughter was born in 2009 during our second deployment. She is sweet, and wise beyond her years. We constantly have to remind people that she is much younger than she seems.
Our second son Taz has had a rough road health-wise since being born a month early in 2012. He has dysphagia with frank aspiration before the swallow. He also has RAD, but it is unknown if this is related to his dysphagia or if it is related to lung damage from his fight with RSV at 5 weeks of age. He ended being the reason for my first ambulance ride. The paramedics were freaked out, which freaked me out too. He was intubated for about a week. It is believed that this life threatening illness at such an early age triggered his celiac disease. Taz hasn't grown out of his dysphagia, and at this point the question isn't when he will grow out of his dysphagia, it is if he will outgrow his dysphagia. At one year of age, he was barely 12 pounds. He is on prescription formula to help him maintain his current 25 lbs of toddler.
Our youngest son was born just 14 months after Taz in 2013. He is a massive lunk of love, and best friends with Taz. They play, fight, and cuddle all day.
Our life has been full of more downs than ups lately. The struggle to keep Taz healthy is constant. We have bags packed for a trip to the ER (and possible admission) all the time.
I have my days of feeling depressed, but in general I am fairly happy. Society often tells us that we should always be happy, that we should find our bliss and pursue it. I've tried to chase happiness, I ended up more depressed because I could never really achieve happiness. If I tried to be happy while Taz is screaming in pain, because he is so dehydrated after playing at the park-I couldn't be happy. In that moment I am in maternal agony. In that moment, I feel the crushing weight of the health conditions of my child, and I feel completely and utterly helpless.
Instead I strive for contentment. In searching to be content, I can focus on the positives of the situation in retrospect; Taz had good fluid intake, but he didn't have good salt intake. So if we keep him well salted on hot and busy days, we can avoid the leg cramps from dehydration that caused him so much pain. There is absolutely nothing that I can be happy about in the situation. I can't be happy that our 2 year old was experiencing leg cramps from dehydration. If I tried to be happy, I would become increasingly depressed.
Our youngest daughter was born during my husband's last deployment. I was a single mother of 4 children (3 age 4 and under) for months before my husband returned. When he returned, he faced the many demons of deployment. The price that those that serve is much higher than the time that they spend overseas. That price is shared by the family in some form or another, no matter how hard the man returning tries not to share it. I would actually posit that by trying to shoulder it themselves, they make the burden heavier for everyone. That is a topic to explore later, not right now. I fully expected to have postpartum depression after our daughter was born. I really thought that I would become depressed, and non-functional after she was born. I very nearly decided to take anti-depressants for PPD because I thought that because I should be depressed, that I must be depressed. Instead of sadness, I felt so happy that it scared me. I honestly wondered if my happiness was really masked depression. I had no real reason to be happy; I was a single mother and my husband was in a war zone.
In retrospect, I believe I was happy because I lived in the moment and tried to look at every challenge from the future. My house was an absolute disaster. Our eldest son was constantly misbehaving by dumping this or that all over the floor, or tracking butter thru the house. He behaved like a 2 year old boy that missed his dad. I realized that I could crack the whip for the whole deployment, or I could take that moment and realize it didn't ultimately matter. That butter tracked across the carpet would be a funny story in retrospect (I was on the phone with my husband overseas when he did it). I decided to take pictures, and have the kids clean up afterward.
I could have raged to have everything in perfect order. I am positive that our kids would have fallen in line, and the external would have been orderly and nice. My life would have been smooth on the surface, and my interior life would have been fitful and disturbed. The world would have seen the perfect exterior, and I could keep the imperfect interior as my own little secret. Instead, I had shredded paper all over my house for months; but I had kids that were happy even though they missed their dad, and I found a happiness in motherhood that I didn't know was possible.
Life is full of ups and downs. We don't always have a guarantee of smooth sailing on the horizon. I don't know if our lives will ever be calm and easy. I have learned that seeking happiness isn't the goal. Happiness is fleeting and conditional. You can't really be happy when everything is falling down around you. You can find contentment in the moments between the chaos, or moments during the chaos.
For some people, the highs and lows of mood have nothing to do with life circumstances, and everything to do with their personal body chemistry. I don't discount that mood disorders exist. That isn't what I speak about when I say that contentment rather than happiness should be the goal. The truth is that sometimes we are depressed because we have very valid reasons for being depressed. If we can have valid reasons for being joyous, we can certainly have reasons for being depressed. If we have valid reasons for being depressed, acknowledging those reasons can help us travel thru the depression and look for the little flowers of contentment along the path.
I'm not perfect. I get depressed, I have days when everything is very hard. The days that I have to calm the very valid fears of big brother/sisters for their little brother are heartrending. I wish that I could lie and push all those fears away. I wish that I could say that when Taz is "x" age, he can go swimming and camping and play like a normal child. I can't say anything even close to that, because we honestly don't know. But I can be content in the moments that we have now. In finding those moments of contentment, I have found a happiness that I never imagined possible.
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