Big day today - spent most of it at Children's Hospital for LB's (planned) semi-annual checkup with his metabolic team and a (unexpected) visit to the Pediatric Heart Institute. After lots of wiggling through an echocardiogram and EKG, he got a clean bill of health from the cardiologist! Thrilled and thankful for this great, great news!. It has been a stressful and uncertain few weeks, so it's a HUGE relief to put this one in the win column. He has two completely benign heart murmurs. And I can exhale.
I'll update on the metabolic appointment later. The cliff's notes version is that it went really well, too.
Showing posts with label cardiology. Show all posts
Showing posts with label cardiology. Show all posts
Thursday, October 3, 2013
Thursday, September 26, 2013
A Small Victory and a Tiny Bit of Relief
I forgot to take the cardiology referral with me to work today, but the minute I walked in the door after picking up the boys, I made that phone call. I was dreading having to take LB to yet another specialist (mostly because I didn't want him to have a heart problem in addition to his metabolic condition), but at the same time, I was anxious to have some clarity and some answers about the murmurs and what they meant. I was also dreading calling them and hearing that they could squeeze us in for an appointment in November and that we would have to wait more than a month to get those answers.
To my pleasant PLEASANT surprise, after taking all of the basic information on LB, they asked if we could make an appointment on MONDAY. Really? You mean Monday as in 4 short days from now? Why yes, Monday...in four days. I was floored. Unfortunately, the appointment time was right in the middle of our oldest son's first preschool field trip, which we had volunteered to chaperone, so I pressed my luck and asked what their next opening was. It was on Thursday, exactly a week from today and I took it.
I hung up the phone and exhaled. I was nauseous with worry and had seriously been on the verge of tears all day because I was so upset by the thought of LB having something else on his medical resume. Knowing that we would have answers in one week was a small measure of relief. I can deal with these feelings of anxiety and uncertainty for a week. We wouldn't have to wait for a month to figure this out. At this time next week, we'll know what we're dealing with. We're hoping for another innocent murmur. If it turns out to be one of the other possibilities (hole in the heart, heart valve problem), we'll just need to get to that place of peace again (similar to what we had to do when we found out he had MCADD) and just do what we need to do.
To my pleasant PLEASANT surprise, after taking all of the basic information on LB, they asked if we could make an appointment on MONDAY. Really? You mean Monday as in 4 short days from now? Why yes, Monday...in four days. I was floored. Unfortunately, the appointment time was right in the middle of our oldest son's first preschool field trip, which we had volunteered to chaperone, so I pressed my luck and asked what their next opening was. It was on Thursday, exactly a week from today and I took it.
I hung up the phone and exhaled. I was nauseous with worry and had seriously been on the verge of tears all day because I was so upset by the thought of LB having something else on his medical resume. Knowing that we would have answers in one week was a small measure of relief. I can deal with these feelings of anxiety and uncertainty for a week. We wouldn't have to wait for a month to figure this out. At this time next week, we'll know what we're dealing with. We're hoping for another innocent murmur. If it turns out to be one of the other possibilities (hole in the heart, heart valve problem), we'll just need to get to that place of peace again (similar to what we had to do when we found out he had MCADD) and just do what we need to do.
Wednesday, September 25, 2013
18 Month Check-Up (The Well Visit that Wasn't)
LB had his 18 month check up today. As usual, we were looking forward to seeing how much he weighed, how tall he was and how he was progressing in physical/motor/social/verbal skills via the developmental questionnaire we fill out at each well appointment. The visit started great. He weighs 22 lbs (19th percentile) and is 33 inches tall (61st percentile) and we got through about 20 more developmental questions that put him solidly ahead of the curve (running, talking, picking up small objects, stacking blocks, etc., etc., etc.). Then the pediatrician came in and told us how great he looked and how well he was doing. Fabulous!
Then, he started his physical exam. LB was cooperative, as usual, and at the point that the doctor started listening to his heart, I could tell that he was taking extra time and listening extra carefully. Initially, I was not concerned at all. We had seen another pediatrician at the last appointment because we just needed to get him in quickly (since I -ahem- missed his 15 month appointment - doh!!), so I assumed our regular pediatrician was just taking some extra time to hear the innocent Still's murmur that was found last month. Well, turns out he heard the Still's murmur AND another one. He was concerned about the other one.
He explained that murmurs are just noises that the bloodflow of the heart makes and that certain noises can indicate certain things. The new murmur that he was hearing could be a few things -- it could be something else that is innocent OR it could be two other things that were far from innocent. He told us that murmurs sometimes indicate blood flowing through a hole in the heart that isn't supposed to be there and that murmurs sometimes indicate problems with heart valves, which are supposed to have three flaps (called a tricuspid valve), but can sometimes have only have two flaps (called a bicuspid valve). Those final two scenarios were concern enough based on the specific sounds he was hearing, to refer him to a pediatric cardiologist. The pediatrician was reassuring and did a great job of delivering the news and I definitely put on my game face and told him I understood and appreciated the need to be thorough, to get it checked out, etc., but on the inside, I was crushed.
Really? Our sweet little boy who already has one medical condition to contend with and now he has to go see a cardiologist because he might need heart surgery?! Really? Do we have to add this to his plate, too?
I also started to blame myself. What the heck was I doing while I was pregnant to cause him to have a heart problem on top of the faulty genes I passed onto him? Did I somehow cause this? Could this one be my fault?
It was a pretty silent ride home from the pediatrician and it took us awhile to call Grandparents and siblings with the appointment stats (which are usually happy phone calls) considering there was also this rather crummy news to report, as well.
Luckily, the pediatrician recommended two pediatric cardiology groups in our metro area and I have a Task Force friend that is the world's most knowledgeable parent resource on pediatric hearts who was able to point me to the cardiology group that she trusts the most (Amanda Rose Adams, check out her book Heart Warriors, she is amazing!) so at least it will be easy to schedule an appointment, which we are anxious to do. I'm worried that this uncertainty hanging over us will quickly become oppressive. I know specialists are sometimes hard to get in to see, and I can't imagine needing to wait a month to find out what's going on. I'm already feeling in a funk over this whole thing. LB is too cute of a kid to be sick!!
Then, he started his physical exam. LB was cooperative, as usual, and at the point that the doctor started listening to his heart, I could tell that he was taking extra time and listening extra carefully. Initially, I was not concerned at all. We had seen another pediatrician at the last appointment because we just needed to get him in quickly (since I -ahem- missed his 15 month appointment - doh!!), so I assumed our regular pediatrician was just taking some extra time to hear the innocent Still's murmur that was found last month. Well, turns out he heard the Still's murmur AND another one. He was concerned about the other one.
He explained that murmurs are just noises that the bloodflow of the heart makes and that certain noises can indicate certain things. The new murmur that he was hearing could be a few things -- it could be something else that is innocent OR it could be two other things that were far from innocent. He told us that murmurs sometimes indicate blood flowing through a hole in the heart that isn't supposed to be there and that murmurs sometimes indicate problems with heart valves, which are supposed to have three flaps (called a tricuspid valve), but can sometimes have only have two flaps (called a bicuspid valve). Those final two scenarios were concern enough based on the specific sounds he was hearing, to refer him to a pediatric cardiologist. The pediatrician was reassuring and did a great job of delivering the news and I definitely put on my game face and told him I understood and appreciated the need to be thorough, to get it checked out, etc., but on the inside, I was crushed.
Really? Our sweet little boy who already has one medical condition to contend with and now he has to go see a cardiologist because he might need heart surgery?! Really? Do we have to add this to his plate, too?
I also started to blame myself. What the heck was I doing while I was pregnant to cause him to have a heart problem on top of the faulty genes I passed onto him? Did I somehow cause this? Could this one be my fault?
It was a pretty silent ride home from the pediatrician and it took us awhile to call Grandparents and siblings with the appointment stats (which are usually happy phone calls) considering there was also this rather crummy news to report, as well.
Luckily, the pediatrician recommended two pediatric cardiology groups in our metro area and I have a Task Force friend that is the world's most knowledgeable parent resource on pediatric hearts who was able to point me to the cardiology group that she trusts the most (Amanda Rose Adams, check out her book Heart Warriors, she is amazing!) so at least it will be easy to schedule an appointment, which we are anxious to do. I'm worried that this uncertainty hanging over us will quickly become oppressive. I know specialists are sometimes hard to get in to see, and I can't imagine needing to wait a month to find out what's going on. I'm already feeling in a funk over this whole thing. LB is too cute of a kid to be sick!!
Subscribe to:
Posts (Atom)