for those of you visiting the blog for the first time, or for the first time in awhile…
max was born with a heart defect called a double aortic arch. basically during development his aorta forked and grew around either side of his trachea. he had trouble breathing at birth and at 3 days old was transferred to children's hospital in milwaukee. it was there he was diagnosed. at 7 days old they did heart surgery to clip the non-dominant side of the aorta. max was in the hospital until he was 28 days old. he had to learn to eat and breathe and swallow all at the same time.
he has recovered wonderfully. we see a pediatric cardiologist, now once a year, to check that his heart is developing correctly and that there are no issues with the blood flow. the doctor is fantastic and so far so good. she is always really reassuring.
max has tracheomalacia. which is basically a soft airway. it causes stridor or noisy breathing. when he was a baby he had a harder time. things have definitely gotten better as he has grown. the only time you can really notice it is when he is physically active, when he is sick and sometimes when he eats/drinks. we just have to be careful with respiratory illness…more so when he was little. until about 2 years old, almost every cold led to a doctor visit with breathing treatments/steroids/or antibiotics. we're at a much better place now.
thanks for checking this out and for your interest in what's going on with max.
let me know if you have any questions…kellyann823@hotmail.com
Thursday, January 23, 2014
more on max (update from our children's hospital visit)...
(fyi- this is a long post!)
i didn't feel it was necessary to share all of this on facebook, but have had a few people ask about how tuesday's appointment went. this seemed like a good way to share the information with people!
while in milwaukee we first had pulmonary function tests done. basically these tests measure the amount of air max can exhale quickly and forcefully and then also the amount of air he takes back in. they usually don't do these tests on such young kids...but i wanted some sort of visual data to see if he was improving, staying the same or getting worse. max did a great job following directions and they were able to get the data they needed. we will have these tests done again in 6 months.
next we headed to the advc (airway, digestive, vocal clinic) appointment. here we were planning to see max's ent (dr. sulman, who has known max since he was 3 days old!), a pulmonary doctor and a speech therapist. we passed on seeing the digestive doctor because max has no issues and i thought i'd save us some $!
they checked him over. reported that his tonsils looked just fine (previously they had been enlarged and after a challenging sleep study they had wanted to have his tonsils removed). we talked about his sleeping - how he's not really a snore-er, just a loud breather in different positions. we also talked about how he doesn't really wake up at night unless he has a bad dream or has to go potty...so they are no longer concerned that he has apnea.
they asked if we had any new concerns. and for us, the reoccurring issue is with strenuous exercise. the only time we really notice his tracheomalacia is when he runs or really exerts himself. he gets loud, red faced, and sweaty. so i suggested maybe we have max run around so that they could see/hear what happened. max was happy to oblige. he ran back and forth in part of the hallway. after a little while, the noisy breathing was obvious. all three docs and the medical student put their stethoscopes on him to take a listen. it was pretty cool. they noticed that although there was "noise" around his trachea, there was much more noise come from his throat area...more specifically, his vocal cords. the four medical professionals then began talking to each other - some things i understood and some i didn't. :) they asked if they could scope him and take a look at his vocal cords. of course i said yes. this momma wants some answers!
the pulmonary doctor explained to me that they thought he could have something called "paradoxal vocal fold dysfuncion." the scope would allow them to take a look and see if they were correct. first of all, let me tell you how amazing max is. he did such a good job listening to instructions, answering questions, and being brave. i'm so proud of that little boy! everyone just melted in his hands...seriously he's a charmer. all the docs talked about how smart and personable he was. it was awesome.
so we went into the other room, they got him ready for the scope and just went for it. i can't imagine how strange and uncomfortable it was for max to have a flexible cord with a light and camera on the end go down his nose and into his throat. there were a few tears, but he did so good. they were able to get a decent look and think that their suspicions were right.
what is paradoxal vocal fold dysfunction (pvfd)? basically what happens is something triggers the vocal cords to close part way or all of the way when they should actually be open. the triggers include anxiety, allergies, asthma, and exercise. for max, it seems that the trigger would be exercise.
the last few days have been full of a mix of emotions for me. part of me feels sad that max has another "condition." but the treatment for pvfd is non-evasive. we will try an inhaler that is known to help to keep his airway more open. we are also going to be evaluated to be seen by a speech language pathologist for "voice therapy." the voice therapy will teach him different ways to breathe and hopefully train him to use those skills when he exercises so that he is getting more air during strenuous activities. he also has nodules on his vocal cords that are basically callouses on his vocal cords from the stress of trying to force air in and out during exercise. if any of you have ever noticed max sounding a little hoarse...the nodules are what causes that hoarseness.
so now the fun starts of our insurance trying to make us find a local provider that is "in network" rather than going with a specialist in milwaukee that is familiar with this condition, has treated other children with it, and is in the same clinic building as his ent and pulmonary doctors. ugh. so frustrating. i've got a call out to a local and recommended speech and language pathologist. now i have to wait to hear back from her, explain the complexities of max's issues, and then see if she can treat him. if not, i'm sure they'll have me talk to someone else. i could go on and on about my frustrations about the health insurance system...but i'll spare you my rant.
so, that's where we are at. they are happy with max's growth. his eating and drinking and overall speech are great. there were no initial concerns with the results of his first pulmonary function test. we have "graduated" from the clinic visits. now we just will see the ent in 12 months and the pulmonary doctor in 6 months. and now we will begin the waiting game of trying to start the process of dealing with the pvfd.
we just want max to be able to be a kid...to run and jump and play. right now he handles everything fine...he just takes breaks when he needs to. we worry about kids making fun of him in the future, about him being sad that he can't play certain sports or keep up with his peers. we just want him to be happy and we're ready to help him in any way we can!
max with his well deserved reward...strawberry cheesecake at the cheesecake factory!
i didn't feel it was necessary to share all of this on facebook, but have had a few people ask about how tuesday's appointment went. this seemed like a good way to share the information with people!
while in milwaukee we first had pulmonary function tests done. basically these tests measure the amount of air max can exhale quickly and forcefully and then also the amount of air he takes back in. they usually don't do these tests on such young kids...but i wanted some sort of visual data to see if he was improving, staying the same or getting worse. max did a great job following directions and they were able to get the data they needed. we will have these tests done again in 6 months.
next we headed to the advc (airway, digestive, vocal clinic) appointment. here we were planning to see max's ent (dr. sulman, who has known max since he was 3 days old!), a pulmonary doctor and a speech therapist. we passed on seeing the digestive doctor because max has no issues and i thought i'd save us some $!
they checked him over. reported that his tonsils looked just fine (previously they had been enlarged and after a challenging sleep study they had wanted to have his tonsils removed). we talked about his sleeping - how he's not really a snore-er, just a loud breather in different positions. we also talked about how he doesn't really wake up at night unless he has a bad dream or has to go potty...so they are no longer concerned that he has apnea.
they asked if we had any new concerns. and for us, the reoccurring issue is with strenuous exercise. the only time we really notice his tracheomalacia is when he runs or really exerts himself. he gets loud, red faced, and sweaty. so i suggested maybe we have max run around so that they could see/hear what happened. max was happy to oblige. he ran back and forth in part of the hallway. after a little while, the noisy breathing was obvious. all three docs and the medical student put their stethoscopes on him to take a listen. it was pretty cool. they noticed that although there was "noise" around his trachea, there was much more noise come from his throat area...more specifically, his vocal cords. the four medical professionals then began talking to each other - some things i understood and some i didn't. :) they asked if they could scope him and take a look at his vocal cords. of course i said yes. this momma wants some answers!
the pulmonary doctor explained to me that they thought he could have something called "paradoxal vocal fold dysfuncion." the scope would allow them to take a look and see if they were correct. first of all, let me tell you how amazing max is. he did such a good job listening to instructions, answering questions, and being brave. i'm so proud of that little boy! everyone just melted in his hands...seriously he's a charmer. all the docs talked about how smart and personable he was. it was awesome.
so we went into the other room, they got him ready for the scope and just went for it. i can't imagine how strange and uncomfortable it was for max to have a flexible cord with a light and camera on the end go down his nose and into his throat. there were a few tears, but he did so good. they were able to get a decent look and think that their suspicions were right.
what is paradoxal vocal fold dysfunction (pvfd)? basically what happens is something triggers the vocal cords to close part way or all of the way when they should actually be open. the triggers include anxiety, allergies, asthma, and exercise. for max, it seems that the trigger would be exercise.
the last few days have been full of a mix of emotions for me. part of me feels sad that max has another "condition." but the treatment for pvfd is non-evasive. we will try an inhaler that is known to help to keep his airway more open. we are also going to be evaluated to be seen by a speech language pathologist for "voice therapy." the voice therapy will teach him different ways to breathe and hopefully train him to use those skills when he exercises so that he is getting more air during strenuous activities. he also has nodules on his vocal cords that are basically callouses on his vocal cords from the stress of trying to force air in and out during exercise. if any of you have ever noticed max sounding a little hoarse...the nodules are what causes that hoarseness.
so now the fun starts of our insurance trying to make us find a local provider that is "in network" rather than going with a specialist in milwaukee that is familiar with this condition, has treated other children with it, and is in the same clinic building as his ent and pulmonary doctors. ugh. so frustrating. i've got a call out to a local and recommended speech and language pathologist. now i have to wait to hear back from her, explain the complexities of max's issues, and then see if she can treat him. if not, i'm sure they'll have me talk to someone else. i could go on and on about my frustrations about the health insurance system...but i'll spare you my rant.
so, that's where we are at. they are happy with max's growth. his eating and drinking and overall speech are great. there were no initial concerns with the results of his first pulmonary function test. we have "graduated" from the clinic visits. now we just will see the ent in 12 months and the pulmonary doctor in 6 months. and now we will begin the waiting game of trying to start the process of dealing with the pvfd.
we just want max to be able to be a kid...to run and jump and play. right now he handles everything fine...he just takes breaks when he needs to. we worry about kids making fun of him in the future, about him being sad that he can't play certain sports or keep up with his peers. we just want him to be happy and we're ready to help him in any way we can!
max with his well deserved reward...strawberry cheesecake at the cheesecake factory!
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