We met with the Chief of Pediatric Surgery today. She and her student were both wonderful. They were both thorough, good listeners, and we didn't feel rushed. Everyone agreed that we will try to wait a year before during surgery. She hopes that over the course of the next year he will grow out of his reflux. She said the surgery is still an option for him and something we should keep in mind, but for now we are going to hold off on it.
In discussing Alexander's medical history and the consequences of doing surgery, the issue of his swallowing difficulty came up. We have mentioned this to his doctors since he was a newborn, but it has always been dismissed. She was bothered by it and is going to make a note to his GI dr to look into it more. If we decide at some point to do the surgery, he will need to have a swallow study done to investigate his swallow mechanism. (If there is an issue he will not be eligible for the surgery). It may be something his GI dr decides to look into now and not wait. We'll discuss it at his app't next month and see how she wants to proceed. If he has it done, he'll have to go out to Boston Children's Hospital, as it is not done here.
His heart murmur seems to be a little bit more pronounced. Nothing emergent, but something to take note of.
So we are really pleased with how everything went today. It's the outcome we were hoping for. Thanks for all of the prayers and words of encouragement. :)
Thursday, August 18, 2011
Wednesday, July 20, 2011
Surgeon Call
The Chief of Pediatric Surgery called today (not the surgeon we saw previously). She looked over Alexander's upper GI and went over the results. Even though the hernia didn't show up on the test, she said that it only means it isn't large. It is likely smaller and possibly transient - which is what we thought. At this point in time, she is on the fence whether or not to do the surgery. Because of his symptoms and how bad he gets during a bad spell, he is definitely a candidate. But because he is doing so well developmentally and (GI tract aside) is very healthy, we all hesitate about doing it. She wants to see him in August to get an accurate assessment of his weight/growth and discuss the surgery more in depth.
Alexander continues to feel well following the upper GI and likes reminding us that he's, "Such a good boy at the doctor!" :) Love him!
Alexander continues to feel well following the upper GI and likes reminding us that he's, "Such a good boy at the doctor!" :) Love him!
Tuesday, July 19, 2011
Upper GI - Done!
I would just like to start by saying Alexander is amazing - what a difference a year can make! His comprehension is at the point where he can be preset really well for things like this, and because he has so much experience with these things (sadly), he takes it all in stride.
The upper GI showed reflux, but not a hiatal hernia. If it wasn't for the suspicion of the hernia, they weren't going to redo the test. (They thought it was a bit ridiculous we were there again). The doctor said that based on his last upper GI you can't dispute the presence of reflux. It was nice to speak with someone who validated everything we've been through!
We will be hearing back from the surgeon next week to hear her assessment of the results. We suspect that they will not want to perform the surgery, and refer us back to his GI specialist. But we will see!
The upper GI showed reflux, but not a hiatal hernia. If it wasn't for the suspicion of the hernia, they weren't going to redo the test. (They thought it was a bit ridiculous we were there again). The doctor said that based on his last upper GI you can't dispute the presence of reflux. It was nice to speak with someone who validated everything we've been through!
We will be hearing back from the surgeon next week to hear her assessment of the results. We suspect that they will not want to perform the surgery, and refer us back to his GI specialist. But we will see!
Tuesday, July 12, 2011
We met with a general pediatric surgeon today. The appointment definitely went differently than we had thought it would go. Alexander is going to have an upper GI scheduled to get a clearer picture about the hiatal hernia. Apparently there are very different opinions on the interpretation of test results and symptoms over the past 2 years. This doctor doesn't feel there's enough evidence to say he even has acid reflux (not that he has any other thought on a diagnosis). It was a bit like being in the Twilight Zone...
Tuesday, July 5, 2011
New meds
Alex has continued to not much better. Eating and drinking have become such a struggle for him. Since everything he eats has been refluxing back up, and he usually chokes when he tries to drink, he has decided that eating and drinking are not really for him. Not the best plan for anyone, especially a growing toddler.
I spoke with his GI doctor this morning. She wants to switch from the Prevacid to Nexium (still twice a day) and see if that gives him any improvement. He also woke this morning with a congested chest, so we were sent to the pediatrician to rule out pneumonia. Because of the frequent choking and aspiration, reflux induced pneumonia is always a concern. Thankfully, his chest sounded okay. If the cough worsens, he will get a chest x-ray.
He does seem a little better this morning. After 2 hours he agreed to drink some milk. He was then more willing to eat and drink.
We will watch him to see if the Nexium helps until Friday. If there's no improvement, the GI specialist will set us up with an appointment for us to speak with the general surgeon and decide if the surgery is right for him. Alex's pediatrician has some concerns about the surgery and will be involved in the decision making process, as well.
I spoke with his GI doctor this morning. She wants to switch from the Prevacid to Nexium (still twice a day) and see if that gives him any improvement. He also woke this morning with a congested chest, so we were sent to the pediatrician to rule out pneumonia. Because of the frequent choking and aspiration, reflux induced pneumonia is always a concern. Thankfully, his chest sounded okay. If the cough worsens, he will get a chest x-ray.
He does seem a little better this morning. After 2 hours he agreed to drink some milk. He was then more willing to eat and drink.
We will watch him to see if the Nexium helps until Friday. If there's no improvement, the GI specialist will set us up with an appointment for us to speak with the general surgeon and decide if the surgery is right for him. Alex's pediatrician has some concerns about the surgery and will be involved in the decision making process, as well.
Friday, July 1, 2011
Pathology Report
Alex's doctor called this morning with the pathology report. The biopsy from his esophagus (which was the one that looked like it might be questionable) showed changes to the esophagus as a result of the reflux. Thankfully, it didn't show some of the other conditions that she was concerned about.
The plan for right now is to keep him on his meds, and switch to rice milk for two weeks. If there isn't a change with the rice milk, then he can go back to soy milk. The doctor is contacting a nutritionist, because we need to add some supplements to the rice milk. He also needs to be on a high (healthy) fat diet and take a multi-vitamin while on the rice milk.
As far as the hiatal hernia surgery, it does look like he'll be having it at some point. The conditions that will implement it are vomitting, pain, and poor weight gain. Since he meets two out of those three conditions at this time, we are going to work with his diet and reassess in September when he goes back. If he gets really sick between now and then, of course that appointment will be moved up. It's a 2-3 hour surgery with a very long recovery for a 2 year old, so everyone would like to put it off as long as possible. It's also not a "cure all." There's no telling how much it will benefit him, and doesn't mean he won't need additional surgery in the future. At this point, it's his next step, though.
This week he's been getting progressively worse - sleep is becoming a nightmare for both of us. We're hoping this weekend brings some improvement.
The plan for right now is to keep him on his meds, and switch to rice milk for two weeks. If there isn't a change with the rice milk, then he can go back to soy milk. The doctor is contacting a nutritionist, because we need to add some supplements to the rice milk. He also needs to be on a high (healthy) fat diet and take a multi-vitamin while on the rice milk.
As far as the hiatal hernia surgery, it does look like he'll be having it at some point. The conditions that will implement it are vomitting, pain, and poor weight gain. Since he meets two out of those three conditions at this time, we are going to work with his diet and reassess in September when he goes back. If he gets really sick between now and then, of course that appointment will be moved up. It's a 2-3 hour surgery with a very long recovery for a 2 year old, so everyone would like to put it off as long as possible. It's also not a "cure all." There's no telling how much it will benefit him, and doesn't mean he won't need additional surgery in the future. At this point, it's his next step, though.
This week he's been getting progressively worse - sleep is becoming a nightmare for both of us. We're hoping this weekend brings some improvement.
Friday, June 24, 2011
Preliminary Findings
Alexander is SUCH a trooper! He has been an AMAZING patient! Because he had already had an endoscopy, we knew what to expect. This really helped us prepare Alexander for what was going to happen. The past few days we talked pleasantly about what was going to happen, and we made sure to reference it as a "procedure." We wanted him to be able to differentiate this experience from regular doctor appointments. He willingly participated in the all of the pre-op procedures and continued to be cooperative when we went into the OR.
His new doctor was very thorough with us after the procedure. She showed us the images from his GI tract and went over everything with us (a very different experience from last time!). So...here's what she found:
The first thing she noted was some excessive bleeding when taking the tissue sample from his esophagus. This was likely indicative of inflammation, and the biopsy report will shed more light on this.
The second thing she noted was that Alexander has a hiatal hernia. The hernia prevents the opening of his stomach from closing all of the way and allows the contents of his somach to rise back up. At the moment, his doctor is on the fence regarding whether or not to surgically correct it. She wants to wait on the pathology report before deciding anything.
If surgery is not done at this time, it is definitely a condition that we will be monitoring and may require correction in the future.
So for now, we wait for the biopsy results and keep Alex happy and comfortable. We should hear back in a week or so.
We could not be more pleased right now with how everything went. Thank you all so much for your prayers and kind words. We felt very at ease this morning and could totally focus on making the process as comfortable as possible for Alex.
His new doctor was very thorough with us after the procedure. She showed us the images from his GI tract and went over everything with us (a very different experience from last time!). So...here's what she found:
The first thing she noted was some excessive bleeding when taking the tissue sample from his esophagus. This was likely indicative of inflammation, and the biopsy report will shed more light on this.
The second thing she noted was that Alexander has a hiatal hernia. The hernia prevents the opening of his stomach from closing all of the way and allows the contents of his somach to rise back up. At the moment, his doctor is on the fence regarding whether or not to surgically correct it. She wants to wait on the pathology report before deciding anything.
If surgery is not done at this time, it is definitely a condition that we will be monitoring and may require correction in the future.
So for now, we wait for the biopsy results and keep Alex happy and comfortable. We should hear back in a week or so.
We could not be more pleased right now with how everything went. Thank you all so much for your prayers and kind words. We felt very at ease this morning and could totally focus on making the process as comfortable as possible for Alex.
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