2 and a half weeks ago we had our trip to Boston. It is truly an amazing hospital. During the day, it is a bright, bustling, fun atmosphere. Alex attended storytime, music therapy, craft time, played in the playroom, went up and down musical stairs, and got to meet a player from the Red Sox! At night, however, you're reminded of where you are - hospital monitors, exhuasted parents, tight security, and children who just want to go home.
We were very pleased with the doctor - his approach, his thinking, his skills. We wish our insurance would let Alex be seen there regularly. While admitted, Alex had bloodwork done, a rectal manometry, an esophageal manometry, and an impedance study. I was able to get the blood results last week, and everything was fine. His doctor is currently on vacation, but we expect to get the diagnostic results soon. He wasn't particularly symptomatic during the testing, so we aren't sure how much information they were really able to get. I'm sure whatever we learn, however, will be helpful in figuring out what our next steps will be, if any.
So many places claim to offer a great facility, medical and volunteer staff, and services, but CHB really delivers. We are so incredibly grateful to have had this opportunity. And we are so thankful for the extraordinary family and friends that have surrounded us with support.
Thursday, August 16, 2012
Thursday, June 28, 2012
BOSTON!
Well the call came! We got our appointment out in Boston! I could barely breathe when she called I was so excited. I'm not going to post specifics about our trip here, but you can email me if you want to know. Alexander will be seen this summer and (for good and bad) he'll spend 3 days at the hospital (2 days admitted). They didn't give me a lot of information yet about how he will be scheduled, but she said there will be a lot of testing. Clinic should be calling before we go out to give me more information about what tests will be done. We plan to do some fun things while we are out there, too, and I'll post the details of our trip when we get back.
We are, naturally, very anxious about the trip, and pray that we will leave with new information that will help us move forward.
We are, naturally, very anxious about the trip, and pray that we will leave with new information that will help us move forward.
Tuesday, April 17, 2012
Quick Update on plans
People have been wondering (as have we!) when we're going out to Boston, so I just wanted to post a quick update....
For those of you who didn't hear, our insurance approved a second opinion and related diagnostic testing out in Boston. There are A LOT of steps that need to be taken and red tape cleared before you can schedule an appointment. We have made it a long way these past few weeks, and now our file is sitting on the doctor's desk. When he has time, he will review Alexander's file, all of the imaging that has been done and review his biopsy slides himself. They are still waiting on the slides and some of the imaging. After everything has been reviewed, he will be scheduled. It will probably be a few more weeks before we are put on the schedule. The doctor is currently being scheduled 2-3.5 months out, so we will likely not make it out there until the end of the summer. We can hope for sooner, though!
For those of you who didn't hear, our insurance approved a second opinion and related diagnostic testing out in Boston. There are A LOT of steps that need to be taken and red tape cleared before you can schedule an appointment. We have made it a long way these past few weeks, and now our file is sitting on the doctor's desk. When he has time, he will review Alexander's file, all of the imaging that has been done and review his biopsy slides himself. They are still waiting on the slides and some of the imaging. After everything has been reviewed, he will be scheduled. It will probably be a few more weeks before we are put on the schedule. The doctor is currently being scheduled 2-3.5 months out, so we will likely not make it out there until the end of the summer. We can hope for sooner, though!
Friday, March 30, 2012
Boston bound.....
Last Friday, Alexander had his swallow study. He did great. The test showed that the muscles in his mouth are not coordinating properly, and every time he would swallow, he would then reflux. There was also one incident of "penetration" - when he swallowed, it went down his trachea instead of his esophagus. He was able to get it up without choking, so without the imaging, we wouldn't have known.
Alex also had a "weird" incident 2 weeks ago. He attended a field trip to a gymnastics class. The first thing they did was an obstacle course involving some tumbling and "flips." Alex really has a problem with being turned upside down, held up in the air, or rapid motion in general. He was upset after his first turn, but really held it together. He went through a second time, really struggled after the flips, and by the time he made his way back to me was hysterical. I was surprised, though, that he couldn't get himself together. He clung to me crying for the next hour. When we got home, he wanted to rest and I thought it was because he was just exhausted from the morning. He didn't eat dinner because his "tummy hurt" - nothing new there. He went to bed, and soon woke up vomiting. He vomited for the next 7 hours. We thought initially it was a stomach bug. Even though he was terribly sick and couldn't keep even water down, it just didn't seem like it was just a bug. Long story short(ish), we consulted with his pediatrician about it and he agrees - it wasn't a bug but an underlying medical condition.
So....lots of doctor conversations later, both his pediatrician and gastroenterologist want him to get a second opinion out in Boston before we proceed with surgery. All of his doctors and the speech pathologist feel as though he needs the surgery (or something!), but nobody feels 100% comfortable with it just yet. The only hold up with going out to Boston is getting the insurance company to approve it. I have a call in to Boston to get him set up with an appointment (because it can be a substantial wait), and his pediatrician will be contacting the insurance company to (hopefully) get approval next week.
That's where we sit at the moment. It has certainly been a stressful time, lately, but I'm so glad that a decision has been made and we're moving forward.
Alex also had a "weird" incident 2 weeks ago. He attended a field trip to a gymnastics class. The first thing they did was an obstacle course involving some tumbling and "flips." Alex really has a problem with being turned upside down, held up in the air, or rapid motion in general. He was upset after his first turn, but really held it together. He went through a second time, really struggled after the flips, and by the time he made his way back to me was hysterical. I was surprised, though, that he couldn't get himself together. He clung to me crying for the next hour. When we got home, he wanted to rest and I thought it was because he was just exhausted from the morning. He didn't eat dinner because his "tummy hurt" - nothing new there. He went to bed, and soon woke up vomiting. He vomited for the next 7 hours. We thought initially it was a stomach bug. Even though he was terribly sick and couldn't keep even water down, it just didn't seem like it was just a bug. Long story short(ish), we consulted with his pediatrician about it and he agrees - it wasn't a bug but an underlying medical condition.
So....lots of doctor conversations later, both his pediatrician and gastroenterologist want him to get a second opinion out in Boston before we proceed with surgery. All of his doctors and the speech pathologist feel as though he needs the surgery (or something!), but nobody feels 100% comfortable with it just yet. The only hold up with going out to Boston is getting the insurance company to approve it. I have a call in to Boston to get him set up with an appointment (because it can be a substantial wait), and his pediatrician will be contacting the insurance company to (hopefully) get approval next week.
That's where we sit at the moment. It has certainly been a stressful time, lately, but I'm so glad that a decision has been made and we're moving forward.
Monday, February 27, 2012
Specialist Appointment
Prior to today, I had been asked what I hoped to get out of this appointment. "I just want it to go well." I didn't really know what that meant...I had no decision that I wanted the doctor to reach. I just wanted it to go well. And it did.
Alexander has been referred for the swallow study, but it is one that can be done locally. I was thrilled to hear that. Our GI wanted it scheduled as soon as possible, so I should be getting a call sometime this week with the appointment.
Addressing his lower GI concerns, he felt that Alex has a general motility disorder. That is what I had suspected all along, but it is nice to have everyone on the same page. It will just involve indefinitely monitoring his diet closely and striving to maintain a comfort level for him. Alex has already been scoped twice and it doesn't seem that there is much more information to obtain.
Regarding his reflux, the doctor was supportive of Alex having the fundoplication surgery. Nothing will be decided on that at this time. We and his pediatrician are undecided and everyone needs to be on board before we move forward.
So I left feeling listened to and that his needs were being appropriately addressed. The ultimate outcome could be that this is Alex's "normal" and we'll just do our best to keep him comfortable. Maybe things will just improve for him over time. Who knows? We'll just keep plugging along and addressing issues as they arise.
Alexander has been referred for the swallow study, but it is one that can be done locally. I was thrilled to hear that. Our GI wanted it scheduled as soon as possible, so I should be getting a call sometime this week with the appointment.
Addressing his lower GI concerns, he felt that Alex has a general motility disorder. That is what I had suspected all along, but it is nice to have everyone on the same page. It will just involve indefinitely monitoring his diet closely and striving to maintain a comfort level for him. Alex has already been scoped twice and it doesn't seem that there is much more information to obtain.
Regarding his reflux, the doctor was supportive of Alex having the fundoplication surgery. Nothing will be decided on that at this time. We and his pediatrician are undecided and everyone needs to be on board before we move forward.
So I left feeling listened to and that his needs were being appropriately addressed. The ultimate outcome could be that this is Alex's "normal" and we'll just do our best to keep him comfortable. Maybe things will just improve for him over time. Who knows? We'll just keep plugging along and addressing issues as they arise.
Tuesday, February 14, 2012
Winter Update
It seems like as soon as Alexander gets better from one illness, he picks up another. I know that's not unusual for his age, but it's made for a tiring winter. Most of these viruses have aggravated his reflux. We were lucky with his most recent illness that it didn't upset his GI tract.
Throughout the winter, Alexander's swallow issues have gotten progressively worse. He has always had trouble with thin liquids, and last August he very suddenly showed improvement - we were all so encouraged by that! The past few months, though, it has gotten worse and worse. He now often has trouble getting solids down and will randomly choke will watching TV or playing. We aren't sure if the choking he experiences while playing is from the reflux or if he's choking on his saliva. He has started drooling more and more, and is developing sores in his mouth.
In January, he also stopped digesting his fruits and veggies. With this, he'd wake at night with abdominal pains. So we stopped fruits and veggies, and the pain stopped.
We were scheduled to see GI in mid-March. I called last week to move up the appointment, and they gave us early March. So today we went to see his pediatrician to try to get some assistance while we wait. He wanted him seen immediately by GI, and was frustrated they haven't come up with more answers or even addressed some of these issues. The office called to get him in sooner, and the soonest was 2 weeks from now. He also pushed for us to go out to Boston. Because of his swallow issues, the GI here may refer us for a swallow study which can only be done out at Boston Children's. If they don't refer us and don't offer any answers, then our pediatrician wants us to go out there for a second opinion. We're also going to discontinue his Zantac, which looks like it isn't doing anything, and add a multi-vitamin.
On the positive side, his weight is good and he looks healthy from the outside! :) He is also a very cooperative patient, which makes the visits easier!
Throughout the winter, Alexander's swallow issues have gotten progressively worse. He has always had trouble with thin liquids, and last August he very suddenly showed improvement - we were all so encouraged by that! The past few months, though, it has gotten worse and worse. He now often has trouble getting solids down and will randomly choke will watching TV or playing. We aren't sure if the choking he experiences while playing is from the reflux or if he's choking on his saliva. He has started drooling more and more, and is developing sores in his mouth.
In January, he also stopped digesting his fruits and veggies. With this, he'd wake at night with abdominal pains. So we stopped fruits and veggies, and the pain stopped.
We were scheduled to see GI in mid-March. I called last week to move up the appointment, and they gave us early March. So today we went to see his pediatrician to try to get some assistance while we wait. He wanted him seen immediately by GI, and was frustrated they haven't come up with more answers or even addressed some of these issues. The office called to get him in sooner, and the soonest was 2 weeks from now. He also pushed for us to go out to Boston. Because of his swallow issues, the GI here may refer us for a swallow study which can only be done out at Boston Children's. If they don't refer us and don't offer any answers, then our pediatrician wants us to go out there for a second opinion. We're also going to discontinue his Zantac, which looks like it isn't doing anything, and add a multi-vitamin.
On the positive side, his weight is good and he looks healthy from the outside! :) He is also a very cooperative patient, which makes the visits easier!
Monday, October 10, 2011
What a "viral infection" means for Alexander
Well our excitement on the day of our last post was short-lived. That evening, Alex suddenly spiked a fever. Any kind of infection in Alexander's body can aggravate any aspect of his GI system. So when Alex catches a bug, we never know which road it will lead down. This time we went down a very steep and scary road.
Alex's reflux very quickly went into overdrive. His reflux was completely out of control causing constant choking and extreme pain. He screamed for nearly 2 days straight that his "teeth hurt." It was puzzling for awhile, but we eventually got him to indicate that it was his throat that hurt. His throat hurt because the acid was relentlessly burning his esophagus. Because it was coming up so quickly and ferociously, he was constantly aspirating. We are always worried about aspiration induced pneumonia with him, so it was an even bigger concern this time.
He came down with the fever Thursday evening. Friday night he was up the entire night, choking and screaming. He also began having difficulty breathing. We saw the on-call doctor Saturday morning. Our primary concern was his respiratory difficulty. His breathing was shallow and his chest was terribly congested. The doctor said that his trouble breathing was from aspirating and that he seemed to also have suffered laryngospasms. During a laryngospasm, the airway and vocal cords lock shut to protect against aspiration. They should release on their own, but in this instant they stay locked shut for a period of time either partially or completely obstructing breathing. He had a few of these episodes over the course of his illness and it is a very scary thing to witness. Alex would panic, flail and during one episode was unable to get any air. They only last a few seconds to a minute, but it is very upsetting for everyone.
The on-call doctor also cautioned us that even though his oxygen levels were good at the time of our visit, if his breathing worsened that night, we'd need to go to the ER for a chest x-ray to check for pneumonia. Thankfully, we didn't need to do that. Typically, Alex would have been put on an antibiotic to prevent the infection from setting in in his lungs, but because of his lower GI condition, Alex can't have an antibiotic unless absolutely necessary.
He ate very little for about 5 days. He refused to eat or drink because it caused him so much pain. On Saturday, he couldn't even swallow his saliva and was drooling like a teething baby. As much as he needed nutrients to help him recover from the infection, he even moreso needed to avoid eating to allow his espophagus to heal.
10 days later, he is still recovering. He still is battling a cough and crankiness, but he is just like a "typical sick kid" now. Needless to say, this recent illness has taken an extreme emotional toll on us. I found a great book today that can be read (free) online, and I intend to purchase, The Reflux Book: A Parent's Guide to Gastroesphageal Reflux. I recommend it to anyone who has a reflux baby or has a loved one with a reflux baby. If you have never endured it, you cannot imagine the physical and psychological toll on the family. This book has so much great information on the disorder itself, as well as insight into the mental state of the caregivers. It is extremely validating for parents of a child with GERD.
Alex's reflux very quickly went into overdrive. His reflux was completely out of control causing constant choking and extreme pain. He screamed for nearly 2 days straight that his "teeth hurt." It was puzzling for awhile, but we eventually got him to indicate that it was his throat that hurt. His throat hurt because the acid was relentlessly burning his esophagus. Because it was coming up so quickly and ferociously, he was constantly aspirating. We are always worried about aspiration induced pneumonia with him, so it was an even bigger concern this time.
He came down with the fever Thursday evening. Friday night he was up the entire night, choking and screaming. He also began having difficulty breathing. We saw the on-call doctor Saturday morning. Our primary concern was his respiratory difficulty. His breathing was shallow and his chest was terribly congested. The doctor said that his trouble breathing was from aspirating and that he seemed to also have suffered laryngospasms. During a laryngospasm, the airway and vocal cords lock shut to protect against aspiration. They should release on their own, but in this instant they stay locked shut for a period of time either partially or completely obstructing breathing. He had a few of these episodes over the course of his illness and it is a very scary thing to witness. Alex would panic, flail and during one episode was unable to get any air. They only last a few seconds to a minute, but it is very upsetting for everyone.
The on-call doctor also cautioned us that even though his oxygen levels were good at the time of our visit, if his breathing worsened that night, we'd need to go to the ER for a chest x-ray to check for pneumonia. Thankfully, we didn't need to do that. Typically, Alex would have been put on an antibiotic to prevent the infection from setting in in his lungs, but because of his lower GI condition, Alex can't have an antibiotic unless absolutely necessary.
He ate very little for about 5 days. He refused to eat or drink because it caused him so much pain. On Saturday, he couldn't even swallow his saliva and was drooling like a teething baby. As much as he needed nutrients to help him recover from the infection, he even moreso needed to avoid eating to allow his espophagus to heal.
10 days later, he is still recovering. He still is battling a cough and crankiness, but he is just like a "typical sick kid" now. Needless to say, this recent illness has taken an extreme emotional toll on us. I found a great book today that can be read (free) online, and I intend to purchase, The Reflux Book: A Parent's Guide to Gastroesphageal Reflux. I recommend it to anyone who has a reflux baby or has a loved one with a reflux baby. If you have never endured it, you cannot imagine the physical and psychological toll on the family. This book has so much great information on the disorder itself, as well as insight into the mental state of the caregivers. It is extremely validating for parents of a child with GERD.
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