We finally had our appointment with the pulmonologist yesterday. I think we might be on track to getting some answers....maybe. We met with Dr. Kang, and it was actually a very pleasant appointment. Primary Children's has a new outpatient extension in South Jordan. It's really nice with a lot of fun toys and activity centers. While talking to the doctor, we had our own little child specialist playing with Miles and keeping him occupied. It made it so much easier without having to wrangle our little monster.
The appointment was pretty basic. Dr. Kang did a physical, but the majority of the appointment was spent discussing Miles' history. I really appreciated this because I've kind of felt that Miles has gotten a lot of diagnosis without really taking all history into consideration. He also pulled up past x-rays and reviewed them with us. He asked a lot of questions, and we did our best to answer.
So, what is his thought? Well, yes, Miles does have asthma. He does not think that he has malacia. He said that while he appreciated the recognizing of a problem in addition to asthma that it would be terribly unlikely that Miles would just now have this problem. He said that typically that is found in very young babies, and is typically gone by 8 months. Where there were no problems with this prior to a year, it doesn't really make sense. What he thinks that happened is that his vocal chord was nicked during surgery (which is very common), but it hasn't healed. What has happened as a result is that when he drinks, because of the injured vocal chord, there remains a slight opening allowing fluid into his lungs. Then his lungs become inflamed. He said that this could be why some medication can seem to be working and some not. Obviously, when the problem is asthma, asthma medication works, but when this is added, not everything does. He said that when steroids are administered they will seem to help because they will also lessen the inflammation.
So, what now? At this point, everything is still speculation, so we've got a lot of testing ahead of us. On the 28th, we will have a swallow study done at Primary. Hopefully, it will be helpful, but it's totally hit and miss depending upon if Miles will eat and how he does if he does. After the swallow study, the results will be sent to a pediatric ENT, and we'll have an appointment. From there, we'll go back to the pulmonologist with the ENT results, and we'll make a game plan. Still pretty up in the air, but at least it's something to start with, and at least something is being done to try to figure this mess out.
Tuesday, December 15, 2009
Friday, December 11, 2009
Finally Some Answers....Kind Of..
Well, I'm writing, so that must mean Miles is sick again. Unfortunately, that is exactly what it means. Someday, maybe I'll find something happily interesting in our lives to blog about. Late Wednesday night Miles started breathing heavily. It was a little different than our previous attacks because it didn't start with a cold or virus (nothing apparent anyway). We stayed up with him most of the night, giving him his inhaler and keeping him upright, so it was easier to breath. We were determined on staying out of the hospital this time. Sadly, by morning that was looking more and more unlikely.
We took him to his pediatrician's office first thing Thursday morning in hopes that some breathing treatments might get things under control. It ended up actually having positive results....kind of. Typically, when we take Miles to the doctor's office, he sees the PA, Dr. Ditty. We really like him. He's actually the one who first told us about Miles' heart murmur. He took it seriously enough to send us to a cardiologist, and we are certainly grateful for that. This time we saw Dr. Harroutunian (or something like that). He's the Chief of Medicine at the hospital out here (although I don't know that that is saying much). He wasn't really familiar with Miles' history, which would normally be really annoying, but this was kind of nice because it was like a fresh set of eyes....and ears. Despite some of the doctors opinion at Primary, Dr. H. said that there was absolutely no mistaking Miles' asthma. He told us that different breathing problems have very different, very unique breathing sounds. He said that Miles' asthma wheeze was unmistakable. However, different triggers may react differently to different treatments. After 4 typical neb treatments (I think it's called Zopanex), he wasn't really improving. That's the problem that we ran into at Primary, leading some doctors to think that it was something other than asthma. Then Dr. H. tried a different drug, Imotrex(?). After the first treatment, there was a signifigant improvement.
Despite his improved breathing, he certainly wasn't anywhere near 100%. After another treatment and some more careful listening, Dr. H. discovered another reason that the asthma may have been dismissed. He had me listen to Miles with the stethescope. His long wheezy exhalation was much better, but there was still a short whistle with each breath. The doctor explained that this sound was not a result of asthma. It was something else. At the beginning of the visit, he seemed to think that our visit with the pulmonologist next week was unnecessary, but after reviewing his other health problems and listening to him several times, through several treatments, over the course of several hours, he told us that he thought it was a good thing that we were going, and he wanted us to make sure that all of the results of his visit be sent to him. Anyhow, the whistling, he suspects is what is called trachealaryngomalacea. Basically, this is when the muscle in the trachea and or larynx is loose and can get inflamed and flap with breathing. It doesn't sound like it's a very serious problem, but I'm sure we'll know more after our pulmonology appointment on Monday.
For now, luckily, we got sent home with our own nebulizer this time. We're giving Miles a treatment every six hours and will continue that through the weekend. We'll see what the doctor thinks at that point. He's also back on Prednisone, which is always a concern for me, but it is a miracle drug. And he continues his maintainance inhaler, Flovent. He seems to be improving every day, but still isn't great. We're just super happy that we can do something from home rather than living at the hospital. Hopefully, Monday brings even more answers. I am so glad that our appointment is finally here, and I suppose that if Miles had to get sick, this was the time to do it. I'm sure that it will be easier for the Pulmonologist to decifer things when Miles is actually having problems.
Other than Miles, things are pretty okay, very busy. It's been tough getting things done because I have been super sick. For anyone who doesn't already know, Miles is going to be a big brother right around his second birthday. Pregnancy is not treating me kindly. As a result, my house is a mess, and we don't even have a Christmas tree up yet. Things are getting better though, so I'm hoping that I'll get Christmas all ready early next week.
In addition to having a hard time getting things done because of puking, I've had a lot of good stress. Last week, Festival of Trees ended. I love Festival so much! What a wonderful activity, and cause! I've been involved since I was 18, but I've kind of been on a hiatus since I got married. I figured that with all of Miles' time at Primary this year it would be a very appropriate time to pick things back up. I did a heart tree for Miles as a tribute to all the great staff that has helped him. I also did a music wreath.....mainly because I have an entire room full of bins of Festival stuff. One of the bins happened to have a bunch of music stuff in it. They both turned out great (thanks to the help of my mom)! Both sold at auction, which made me feel good. I can't wait until next year. I already know exactly what I'm doing (assuming that I can still get the not so traditional tree I need from Wasatch Shadows). I know it's going to be a big hit, but I'm not going to say anything else. It'll be a surprise. Well, not to the people I've already blabbed to.
My house isn't getting any cleaner on its own, and my keys aren't finding themselves (if you were a 17 month old, where would you hide mommy's keys?), so I'll go for now. Will write again after the appointment.
Keep warm. It's super cold!
We took him to his pediatrician's office first thing Thursday morning in hopes that some breathing treatments might get things under control. It ended up actually having positive results....kind of. Typically, when we take Miles to the doctor's office, he sees the PA, Dr. Ditty. We really like him. He's actually the one who first told us about Miles' heart murmur. He took it seriously enough to send us to a cardiologist, and we are certainly grateful for that. This time we saw Dr. Harroutunian (or something like that). He's the Chief of Medicine at the hospital out here (although I don't know that that is saying much). He wasn't really familiar with Miles' history, which would normally be really annoying, but this was kind of nice because it was like a fresh set of eyes....and ears. Despite some of the doctors opinion at Primary, Dr. H. said that there was absolutely no mistaking Miles' asthma. He told us that different breathing problems have very different, very unique breathing sounds. He said that Miles' asthma wheeze was unmistakable. However, different triggers may react differently to different treatments. After 4 typical neb treatments (I think it's called Zopanex), he wasn't really improving. That's the problem that we ran into at Primary, leading some doctors to think that it was something other than asthma. Then Dr. H. tried a different drug, Imotrex(?). After the first treatment, there was a signifigant improvement.
Despite his improved breathing, he certainly wasn't anywhere near 100%. After another treatment and some more careful listening, Dr. H. discovered another reason that the asthma may have been dismissed. He had me listen to Miles with the stethescope. His long wheezy exhalation was much better, but there was still a short whistle with each breath. The doctor explained that this sound was not a result of asthma. It was something else. At the beginning of the visit, he seemed to think that our visit with the pulmonologist next week was unnecessary, but after reviewing his other health problems and listening to him several times, through several treatments, over the course of several hours, he told us that he thought it was a good thing that we were going, and he wanted us to make sure that all of the results of his visit be sent to him. Anyhow, the whistling, he suspects is what is called trachealaryngomalacea. Basically, this is when the muscle in the trachea and or larynx is loose and can get inflamed and flap with breathing. It doesn't sound like it's a very serious problem, but I'm sure we'll know more after our pulmonology appointment on Monday.
For now, luckily, we got sent home with our own nebulizer this time. We're giving Miles a treatment every six hours and will continue that through the weekend. We'll see what the doctor thinks at that point. He's also back on Prednisone, which is always a concern for me, but it is a miracle drug. And he continues his maintainance inhaler, Flovent. He seems to be improving every day, but still isn't great. We're just super happy that we can do something from home rather than living at the hospital. Hopefully, Monday brings even more answers. I am so glad that our appointment is finally here, and I suppose that if Miles had to get sick, this was the time to do it. I'm sure that it will be easier for the Pulmonologist to decifer things when Miles is actually having problems.
Other than Miles, things are pretty okay, very busy. It's been tough getting things done because I have been super sick. For anyone who doesn't already know, Miles is going to be a big brother right around his second birthday. Pregnancy is not treating me kindly. As a result, my house is a mess, and we don't even have a Christmas tree up yet. Things are getting better though, so I'm hoping that I'll get Christmas all ready early next week.
In addition to having a hard time getting things done because of puking, I've had a lot of good stress. Last week, Festival of Trees ended. I love Festival so much! What a wonderful activity, and cause! I've been involved since I was 18, but I've kind of been on a hiatus since I got married. I figured that with all of Miles' time at Primary this year it would be a very appropriate time to pick things back up. I did a heart tree for Miles as a tribute to all the great staff that has helped him. I also did a music wreath.....mainly because I have an entire room full of bins of Festival stuff. One of the bins happened to have a bunch of music stuff in it. They both turned out great (thanks to the help of my mom)! Both sold at auction, which made me feel good. I can't wait until next year. I already know exactly what I'm doing (assuming that I can still get the not so traditional tree I need from Wasatch Shadows). I know it's going to be a big hit, but I'm not going to say anything else. It'll be a surprise. Well, not to the people I've already blabbed to.
My house isn't getting any cleaner on its own, and my keys aren't finding themselves (if you were a 17 month old, where would you hide mommy's keys?), so I'll go for now. Will write again after the appointment.
Keep warm. It's super cold!
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