Our trial run off Protonix hit a wall and Peter is back on it again. He did not have typical reflux symptoms while off it, but instead had increasing amounts of stomach air that would make him feel terrible until we were able to vent the air out of his G-tube. We were venting him multiple times a day, over a period of 14 days. The doctor is not certain what exactly would cause that type of symptom without further exploration, but suggested that we try Protonix again just to see if that helped Peter to feel better and get rid of the stomach gas. It worked like magic! The day before we resumed, I had to vent his stomach eight times in 10 hours, venting up to 250mL of air out of his tummy. I gave him his IV Protonix at bedtime and the next morning he woke up and said with glad surprise, "Mommy, my tummy doesn't hurt." Sure enough, we did not need to vent his G-tube at all, and his appetite was huge the entire day. He has only needed two ventings of air, minor amounts, since we resumed the Protonix four days ago.
The side effects of Protonix are what led us to want to try to take him off the medication. Osteopenia from bedrest, TPN, and hospital-life (no sunshine for vitamin D) led to his broken leg back in CHOP a few years ago, and one of the potential side effects of Protonix is osteopenia. There are other possible side effects as well, but my biggest concern at this point is osteopenia. Also, Protonix is not well-studied in children. After seeing the profound improvement that Peter had once going back on the medication, it seems obvious he needs to be on it though. I am hoping the doctor can weigh in more on the atypical symptoms when we go back up to Boston.
The vascular anomolies team is to review Peter's case tomorrow evening. We wait with mixed emotions. Of course, Boston is expecting a major snow storm tomorrow with 15 inches of snow and huge winds, so it may unfortunately be postponed.
The fistula is now putting out an average of 1300 mL of fluid a day. It is a challenge to keep the fistula empty enough as to not have the adhesive on the bag wear out too quickly, and to respect Peter's wishes to empty the bag as infrequently as possible. We empty it 5 to 6 times a day, and even then the wear on the bag has been shortened from 3 to 5 days of wear down to 1 to 3 days of wear. The doctor and we agree that trying to increase feeds would be imprudent, as that could further provoke the fistula into putting out more. So once again we are at a standstill in our ability to wean Peter off TPN, even though we had success with getting off 3 nights a week back in 2009. We remain prayerful and hopeful that the surgeon will figure out how to close off the fistula soon.
Tuesday, January 11, 2011
Friday, December 3, 2010
Making plans
Peter's recent CAIR appointment went as hoped. We met with Dr. Jennings and Dr. Kamin together and the topic of surgery for the fistula was revisited. Peter' fistula continues to put out 3/4 to a full liter of fluid a day. Dr. Kamin is rightfully concerned that we will end up back in the hospital for sodium issues if we are not careful, and that playing hospital at home is tricky and not without serious risk, so the feeds will remain at a standstill as to keep the fistula from continuing to rise in output. Dr. Jennings is in agreement then that we should revisit surgery if we are in such a tenuous place in the medical management of the fistula. Of course the same concerns about surgical risk exist as they did before, mainly centered around post-op recovery. Dr. Jennings came up with another idea as to how to close the fistula as he was examining Peter, which would be to close the skin over the fistula, as it seems that the drainage would continue to travel further down through the intestine if it were just not allowed to exit. If I understand correctly, he suspects that the intestine where the fistula is presses up against the abdominal wall, and that we could use the abdominal wall to close the fistula instead of actually trying to cut out the part of the intestine which contains Peter's very vascular fistula. This would greatly reduce the risk of bleeding since Peter has a huge collateral vein that connects to the fistula, and it would be a less complicated surgery by far. The downside is that there would be a good chance that the fistula would end up coming back at some point. The plan is to admit Peter for more abdominal examination which would involve scoping the fistula and a more thorough manual , evaluation of the fistula. Drs. Kamin and Jennings would team up together to evaluate and decide if this would potentially work. We are hoping for this to occur sometime soon in the new year.
Additionally, Peter continues to have small red spots on the left side of his chest, his left arm and hand are noticably bigger than the right, and the spider veins he has on his face seem to be more in number on the left than the right. The spots have been continuing to slowly develop over the last year, and there seems to be one now on his lower left eyelid margin. Dr. Kamin has suggested that we consult with the vascular clinic at Children's Boston, which is world-renowned. We have agreed that this sounds like a good idea and are waiting to hear from them as to what steps we need to take to investigate if this is a vascular abnormality or just a strange phenomenon for Peter whose medical progress doesn't follow the norm anyway.
Apparently the American Academy of Pediatrics has just come out with an officialy statement that probiotics should not be used in children with a central line, due to infection risk. Dr. Kamin brought that up as he felt it necessary that I know that, however he was also appreciative that Peter has been on probiotics for two years and has had no infection, so he is in agreement with our continuing to give Peter probiotics to keep intestinal bacterial overgrowth at bay.
We are also attempting to take Peter off Protonix. He has been on it for years, but there are risks to staying on proton-pump inhibitors, with one of the risks being to bone health. He does not show signs of needing to stay on it for reflux anymore, so we are starting a slow reduction and hopefully successful cessation of the medication.
Will post more about the plans for surgery and vascular clinic as we know more.
Additionally, Peter continues to have small red spots on the left side of his chest, his left arm and hand are noticably bigger than the right, and the spider veins he has on his face seem to be more in number on the left than the right. The spots have been continuing to slowly develop over the last year, and there seems to be one now on his lower left eyelid margin. Dr. Kamin has suggested that we consult with the vascular clinic at Children's Boston, which is world-renowned. We have agreed that this sounds like a good idea and are waiting to hear from them as to what steps we need to take to investigate if this is a vascular abnormality or just a strange phenomenon for Peter whose medical progress doesn't follow the norm anyway.
Apparently the American Academy of Pediatrics has just come out with an officialy statement that probiotics should not be used in children with a central line, due to infection risk. Dr. Kamin brought that up as he felt it necessary that I know that, however he was also appreciative that Peter has been on probiotics for two years and has had no infection, so he is in agreement with our continuing to give Peter probiotics to keep intestinal bacterial overgrowth at bay.
We are also attempting to take Peter off Protonix. He has been on it for years, but there are risks to staying on proton-pump inhibitors, with one of the risks being to bone health. He does not show signs of needing to stay on it for reflux anymore, so we are starting a slow reduction and hopefully successful cessation of the medication.
Will post more about the plans for surgery and vascular clinic as we know more.
Friday, November 12, 2010
Running!
Peter's nurses, therapists, and family have put countless hours into Peter's physical therapy, and look at the results! He is having such a fun time running too!
An overdue update
I can't believe the last update was in July. Time has flown by! The biggest news is that Peter had his FIFTH birthday last week! It was wonderful, and our favorite part was his understanding and excitement about having a birthday. He had some healthy anticipation and did much of the planning for his big day, including making the decision that he would prefer to have his candles placed on a cake instead of the food he prefers to actually eat, which is mint-chocolate-chip ice-cream. He also wanted to go to Mass and to Longwood Gardens, which we gladly honored. Peter had a great time opening cards and gifts this year too, including one from the Coram team that prepares his TPN week after week after week!
The fistula output has returned with more volume than he had last Spring when we were talking about doing surgery to stop it. Putting on the huge amount of ascites is what likely slowed it down over the summer, but now that the ascites is back off, the output has gone up, even with less feeds than he had in the Spring. Peter has been on weekly labs for the last two months or more, as we try to keep electrolytes in balance. We are supposed to meet with the surgeon again when we go back up to Boston later this month, to see if we should revisit the idea of surgery. I don't know what else we can do besides surgery, as there seems to be no way to get Peter off TPN if we can't advance feeds due to the fistula output. The last discussion about surgery ended with a plan where he would be scheduled once he is off TPN for several months, but we can't even get enough in enterally to stop TPN for one night, let alone 7 nights a week. We can actually see and/or smell the enteral formula exiting the fistula, off and on most days.
Peter also has developed more red spots on his left upper chest and neck. We had noticed these towards the end of last year, and now there are more, but no one is sure what they are. His spider veins that are along his lower jawline seem to be more apparent now that his summer tan is going away. Hopefully they are not actually increasing.
Now back to more good news: Aside from the fistula going awry and the spots and spider veins, Peter is doing amazingly well. He is being reevaluated by his therapists to see if we can decrease his therapies now, from once a week to only once or twice a month instead. He is now truly interested in things like Playdoh and trucks and coloring, whereas a few months ago it took a good bit of encouragement to spark even some interest in doing those things.
He also took his first bathtub bath since he was about five or six months old. He screamed the whole time, and the next time too, but afterwards stated that he liked it and is agreeable to another bathtub bath next week. We have a PICC line protector which prevents water from getting to his PICC line and makes a bath feasible. It has taken a long time to convince him to wear it so he can get wet, and to be honest, it took me a long time to feel comfortable with trying a bath with Peter, as the risks of infection go up dramatically if the central line gets wet.
Peter is also learning to ride a bike with training wheels, he is learning to swing, and he has started taking interest in using his little outdoor tools to help his daddy when they are outside together. He is also running now, and he likes it too! To top things off, and remember, he has just turned five, he knows all of the states, by shape and location, and their capitals.
My favorite part of all of the changes though, is that Peter has become very outwardly affectionate with us. He comes up a couple times a day just to give a hug, or to say, "Oh, Mom!" and grab my hand for a loving squeeze. I smile even just as I am thinking about it!
The fistula output has returned with more volume than he had last Spring when we were talking about doing surgery to stop it. Putting on the huge amount of ascites is what likely slowed it down over the summer, but now that the ascites is back off, the output has gone up, even with less feeds than he had in the Spring. Peter has been on weekly labs for the last two months or more, as we try to keep electrolytes in balance. We are supposed to meet with the surgeon again when we go back up to Boston later this month, to see if we should revisit the idea of surgery. I don't know what else we can do besides surgery, as there seems to be no way to get Peter off TPN if we can't advance feeds due to the fistula output. The last discussion about surgery ended with a plan where he would be scheduled once he is off TPN for several months, but we can't even get enough in enterally to stop TPN for one night, let alone 7 nights a week. We can actually see and/or smell the enteral formula exiting the fistula, off and on most days.
Peter also has developed more red spots on his left upper chest and neck. We had noticed these towards the end of last year, and now there are more, but no one is sure what they are. His spider veins that are along his lower jawline seem to be more apparent now that his summer tan is going away. Hopefully they are not actually increasing.
Now back to more good news: Aside from the fistula going awry and the spots and spider veins, Peter is doing amazingly well. He is being reevaluated by his therapists to see if we can decrease his therapies now, from once a week to only once or twice a month instead. He is now truly interested in things like Playdoh and trucks and coloring, whereas a few months ago it took a good bit of encouragement to spark even some interest in doing those things.
He also took his first bathtub bath since he was about five or six months old. He screamed the whole time, and the next time too, but afterwards stated that he liked it and is agreeable to another bathtub bath next week. We have a PICC line protector which prevents water from getting to his PICC line and makes a bath feasible. It has taken a long time to convince him to wear it so he can get wet, and to be honest, it took me a long time to feel comfortable with trying a bath with Peter, as the risks of infection go up dramatically if the central line gets wet.
Peter is also learning to ride a bike with training wheels, he is learning to swing, and he has started taking interest in using his little outdoor tools to help his daddy when they are outside together. He is also running now, and he likes it too! To top things off, and remember, he has just turned five, he knows all of the states, by shape and location, and their capitals.
My favorite part of all of the changes though, is that Peter has become very outwardly affectionate with us. He comes up a couple times a day just to give a hug, or to say, "Oh, Mom!" and grab my hand for a loving squeeze. I smile even just as I am thinking about it!
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