Thursday, June 30, 2016
The Night Before Shade's Second ERCP (from 10/15/2014)
Hello All! I am late-night blogging in anticipation of Shade's second ERCP tomorrow. This is his first one since August of 2012 and while the last one went well, that doesn't mean this one will. An ERCP is where they put a scope down his throat to get a better look at his pancreas and see if there are any narrow ducts. They want to compare it to the results from his first one and see if there are any changes that they can sort of fix. One way to do this would be by placing a stent in any narrow ducts to widen them. I'm on the fence about this because from speaking with other Mom's whose kids have had stents placed, the results can vary. Some do very well with the stents and have long term relief, some have short term relief, and others end up with the worst pancreatitis attack of their lives with no relief until the stent is removed. That is my worst fear right now. To have my baby go in for a procedure that may help and have him come out of it worse for the wear. Even if there are no stents placed, the procedure itself carries a risk of an attack of pancreatitis. We will be staying in the hospital overnight for observation even though it is usually done as an outpatient procedure. We could be home by the weekend or we might have to stay a week or more if he has an attack. The unpredictability is the hardest. Not knowing what is going to happen next. Every time Shade is in the hospital with an attack I wonder if that will be the one that causes him to have pain all of the time and not just during an attack, or if he will be unable to eat without pain and end up with a feeding tube. Things have been hard on him so far, but they could be so much worse and that possibility is always there. I've known it in my gut for a long time that the TP-AIT is the answer for him. I just feel like the odds are stacked in his favor for a very good outcome and it would mean the end of pancreatitis forever!! Of course, I could be wrong, but the fact that Minnesota (the original experts on TP-AIT) agree that it is the route to go with Shade makes me feel that much more strongly that he really needs this. I respect the doctors at Cincinnati Children's and I appreciate that they are trying to approach Shade's treatment with caution, but its starting to feel like I'm just having to jump through hoops to get them to give me an answer. I feel like messing with his already sensitive and irritable pancreas will only cause things to get worse for him, however I am not a doctor and there comes a time when you have to decide to let the doctors do what they have gone to school to do. Being a Mama is hard. Being a Mama to a child with Autism is challenging. Being a Mama to a chronically ill child is heartbreaking.
Cincinnati Evaluation Part 2 (from 9/5/14)
So, we went back to Cincinnati Children's Hospital in August. His first appointment was bright and early, so we drove up the day before and stayed at a hotel. We chose not to stay at the Radisson this time as the sleep number beds were not our cup of tea. The Holiday Inn was clean and in a convenient location. Also, with the hospital discount, the price was right. Never fear, they still had a pool for Shade so that he got to have a little fun during our stay. We also had an appointment on Friday, so we ended up staying two nights this time. It made things a little less stressful that way. On Thursday we met with the pain management specialist, Dr. Goldschneider, and also a Psychologist from the team named Dr. Lynch-Jordan. They were both very kind and attentive and willing to help in any way they could. Dr. Goldschneider even offered to work with us and Shade's doctors in Kentucky through phone calls if they can't manage his pain effectively. I have to tell you, I teared up because it was nice to feel like we had an expert on our side. Kosair hospital (where Shade usually goes during an attack) is considered a smaller children's hospital and simply does not have a pain management team. This has caused a lot of frustration for us because pain relief and management are the main reason we take Shade to the hospital when he is having an attack.
We had a short break after those appointments and went to the car for a snack that I had packed. Then we met with the GI, Dr. Palermo. He told us the results of Shade's fecal elastase test from last visit. Unfortunately, he is even more severely pancreatic exocrine insufficient. Any result below 100 is considered severe and Shade's was 21 this time. This is why he will have to take enzymes for the rest of his life. Fortunately, his vitamin levels looked good the rest of his bloodwork was fine. We finally got to hear what the team wants to do next, and their suggestion is an ERCP. That is where they put a scope with a camera down his throat and get a really good look at the pancreas from the inside and make sure that none of the ducts are narrow or clogged. If there are any narrow spots, they will put in a stent to help open it up and perhaps prevent attacks. They will also be able to see how damaged his pancreas really is. They want to do this scope when Shade hasn't had an attack for a while, and now would be a perfect time, but they have given us a date of October 16. It is usually an outpatient procedure, but they will have Shade stay at least overnight so they can observe him due to the risks of the ERCP causing an attack of pancreatitis. He had one ERCP back in August of 2012 and it did not cause him an attack, but this one may be more thorough or a little more invasive if they have to place a stent. I can't imagine his pancreas would be too happy about that. If it does trigger an attack, we will have to stay until it is over, so probably about 6 days. I really hope that is not the case, but we shall see. If everything looks normal, then they will reassess. I know they are trying to do everything they can to avoid a very serious surgery, but I hate all of the waiting. Don't get me wrong, I would love it if Shade could have relief without a super serious surgery, but it feels so drawn out. If the surgery is meant to happen, I want to get the big, scary thing over with so he can recover and live a normal life!
On Friday we went back to the hospital to meet the endocrinologist, Dr. Elder, and have a glucose tolerance test (mixed meal test). Shade had to fast for it, but that wasn't too big of a deal. The hard part was that they had to put in an IV. They couldn't use his port because accessing it 5 times in 2 hours would put him at great risk of infection. So, they held him down and he screamed and screamed and begged them to stop. It was truly horrible as it always is. He was such a brave boy though. He held his arm perfectly still for them. They were all impressed with how he was able to let them do their job despite his terror. After they got the IV in, he had to drink a certain amount of Vanilla Boost in a very short amount of time. He was thirsty after all of that screaming, so he was able to get it down in the allotted amount of time with minimal complaining about the taste and then we waited. They drew his blood at regular intervals for the next two hours and then he got to eat french fries. :) Dan and I had a quick lunch on the go and we headed back home. There really is no place like home. Staying in the hospital so many times over the past couple of years has made me appreciate it so much more. The picture below is before the IV was in and they had a heat pack taped to his arm to get the vein ready. He was not happy about it and had already taken his glasses off because of tears. He said "I can't play my game in this condition".
We received a phone call a few days ago and are so happy to report that his endocrine function is still normal!! That means that his pancreas is still able to produce insulin normally. Hopefully that means his islet cells are still in great shape! So, now we wait and hope that he doesn't have an attack before October 16. We are really on high alert around here since it has been 3 months since his last attack. Every moan, every belly rub, and everytime he seems extra quiet we ask "How does your tummy feel"? He gets very irritated with us, but we can't help it. We just want to know if we will be gone for the next 6 days. It's like having to go on vacation at the drop of a hat except nobody has any fun.
So, we went back to Cincinnati Children's Hospital in August. His first appointment was bright and early, so we drove up the day before and stayed at a hotel. We chose not to stay at the Radisson this time as the sleep number beds were not our cup of tea. The Holiday Inn was clean and in a convenient location. Also, with the hospital discount, the price was right. Never fear, they still had a pool for Shade so that he got to have a little fun during our stay. We also had an appointment on Friday, so we ended up staying two nights this time. It made things a little less stressful that way. On Thursday we met with the pain management specialist, Dr. Goldschneider, and also a Psychologist from the team named Dr. Lynch-Jordan. They were both very kind and attentive and willing to help in any way they could. Dr. Goldschneider even offered to work with us and Shade's doctors in Kentucky through phone calls if they can't manage his pain effectively. I have to tell you, I teared up because it was nice to feel like we had an expert on our side. Kosair hospital (where Shade usually goes during an attack) is considered a smaller children's hospital and simply does not have a pain management team. This has caused a lot of frustration for us because pain relief and management are the main reason we take Shade to the hospital when he is having an attack.
We had a short break after those appointments and went to the car for a snack that I had packed. Then we met with the GI, Dr. Palermo. He told us the results of Shade's fecal elastase test from last visit. Unfortunately, he is even more severely pancreatic exocrine insufficient. Any result below 100 is considered severe and Shade's was 21 this time. This is why he will have to take enzymes for the rest of his life. Fortunately, his vitamin levels looked good the rest of his bloodwork was fine. We finally got to hear what the team wants to do next, and their suggestion is an ERCP. That is where they put a scope with a camera down his throat and get a really good look at the pancreas from the inside and make sure that none of the ducts are narrow or clogged. If there are any narrow spots, they will put in a stent to help open it up and perhaps prevent attacks. They will also be able to see how damaged his pancreas really is. They want to do this scope when Shade hasn't had an attack for a while, and now would be a perfect time, but they have given us a date of October 16. It is usually an outpatient procedure, but they will have Shade stay at least overnight so they can observe him due to the risks of the ERCP causing an attack of pancreatitis. He had one ERCP back in August of 2012 and it did not cause him an attack, but this one may be more thorough or a little more invasive if they have to place a stent. I can't imagine his pancreas would be too happy about that. If it does trigger an attack, we will have to stay until it is over, so probably about 6 days. I really hope that is not the case, but we shall see. If everything looks normal, then they will reassess. I know they are trying to do everything they can to avoid a very serious surgery, but I hate all of the waiting. Don't get me wrong, I would love it if Shade could have relief without a super serious surgery, but it feels so drawn out. If the surgery is meant to happen, I want to get the big, scary thing over with so he can recover and live a normal life!
On Friday we went back to the hospital to meet the endocrinologist, Dr. Elder, and have a glucose tolerance test (mixed meal test). Shade had to fast for it, but that wasn't too big of a deal. The hard part was that they had to put in an IV. They couldn't use his port because accessing it 5 times in 2 hours would put him at great risk of infection. So, they held him down and he screamed and screamed and begged them to stop. It was truly horrible as it always is. He was such a brave boy though. He held his arm perfectly still for them. They were all impressed with how he was able to let them do their job despite his terror. After they got the IV in, he had to drink a certain amount of Vanilla Boost in a very short amount of time. He was thirsty after all of that screaming, so he was able to get it down in the allotted amount of time with minimal complaining about the taste and then we waited. They drew his blood at regular intervals for the next two hours and then he got to eat french fries. :) Dan and I had a quick lunch on the go and we headed back home. There really is no place like home. Staying in the hospital so many times over the past couple of years has made me appreciate it so much more. The picture below is before the IV was in and they had a heat pack taped to his arm to get the vein ready. He was not happy about it and had already taken his glasses off because of tears. He said "I can't play my game in this condition".
We received a phone call a few days ago and are so happy to report that his endocrine function is still normal!! That means that his pancreas is still able to produce insulin normally. Hopefully that means his islet cells are still in great shape! So, now we wait and hope that he doesn't have an attack before October 16. We are really on high alert around here since it has been 3 months since his last attack. Every moan, every belly rub, and everytime he seems extra quiet we ask "How does your tummy feel"? He gets very irritated with us, but we can't help it. We just want to know if we will be gone for the next 6 days. It's like having to go on vacation at the drop of a hat except nobody has any fun.
- See more at: http://cotaforshadef.com/node/475#sthash.KF5vSCkU.dpufSo, we went back to Cincinnati Children's Hospital in August. His first appointment was bright and early, so we drove up the day before and stayed at a hotel. We chose not to stay at the Radisson this time as the sleep number beds were not our cup of tea. The Holiday Inn was clean and in a convenient location. Also, with the hospital discount, the price was right. Never fear, they still had a pool for Shade so that he got to have a little fun during our stay. We also had an appointment on Friday, so we ended up staying two nights this time. It made things a little less stressful that way. On Thursday we met with the pain management specialist, Dr. Goldschneider, and also a Psychologist from the team named Dr. Lynch-Jordan. They were both very kind and attentive and willing to help in any way they could. Dr. Goldschneider even offered to work with us and Shade's doctors in Kentucky through phone calls if they can't manage his pain effectively. I have to tell you, I teared up because it was nice to feel like we had an expert on our side. Kosair hospital (where Shade usually goes during an attack) is considered a smaller children's hospital and simply does not have a pain management team. This has caused a lot of frustration for us because pain relief and management are the main reason we take Shade to the hospital when he is having an attack.
We had a short break after those appointments and went to the car for a snack that I had packed. Then we met with the GI, Dr. Palermo. He told us the results of Shade's fecal elastase test from last visit. Unfortunately, he is even more severely pancreatic exocrine insufficient. Any result below 100 is considered severe and Shade's was 21 this time. This is why he will have to take enzymes for the rest of his life. Fortunately, his vitamin levels looked good the rest of his bloodwork was fine. We finally got to hear what the team wants to do next, and their suggestion is an ERCP. That is where they put a scope with a camera down his throat and get a really good look at the pancreas from the inside and make sure that none of the ducts are narrow or clogged. If there are any narrow spots, they will put in a stent to help open it up and perhaps prevent attacks. They will also be able to see how damaged his pancreas really is. They want to do this scope when Shade hasn't had an attack for a while, and now would be a perfect time, but they have given us a date of October 16. It is usually an outpatient procedure, but they will have Shade stay at least overnight so they can observe him due to the risks of the ERCP causing an attack of pancreatitis. He had one ERCP back in August of 2012 and it did not cause him an attack, but this one may be more thorough or a little more invasive if they have to place a stent. I can't imagine his pancreas would be too happy about that. If it does trigger an attack, we will have to stay until it is over, so probably about 6 days. I really hope that is not the case, but we shall see. If everything looks normal, then they will reassess. I know they are trying to do everything they can to avoid a very serious surgery, but I hate all of the waiting. Don't get me wrong, I would love it if Shade could have relief without a super serious surgery, but it feels so drawn out. If the surgery is meant to happen, I want to get the big, scary thing over with so he can recover and live a normal life!
On Friday we went back to the hospital to meet the endocrinologist, Dr. Elder, and have a glucose tolerance test (mixed meal test). Shade had to fast for it, but that wasn't too big of a deal. The hard part was that they had to put in an IV. They couldn't use his port because accessing it 5 times in 2 hours would put him at great risk of infection. So, they held him down and he screamed and screamed and begged them to stop. It was truly horrible as it always is. He was such a brave boy though. He held his arm perfectly still for them. They were all impressed with how he was able to let them do their job despite his terror. After they got the IV in, he had to drink a certain amount of Vanilla Boost in a very short amount of time. He was thirsty after all of that screaming, so he was able to get it down in the allotted amount of time with minimal complaining about the taste and then we waited. They drew his blood at regular intervals for the next two hours and then he got to eat french fries. :) Dan and I had a quick lunch on the go and we headed back home. There really is no place like home. Staying in the hospital so many times over the past couple of years has made me appreciate it so much more. The picture below is before the IV was in and they had a heat pack taped to his arm to get the vein ready. He was not happy about it and had already taken his glasses off because of tears. He said "I can't play my game in this condition".
We received a phone call a few days ago and are so happy to report that his endocrine function is still normal!! That means that his pancreas is still able to produce insulin normally. Hopefully that means his islet cells are still in great shape! So, now we wait and hope that he doesn't have an attack before October 16. We are really on high alert around here since it has been 3 months since his last attack. Every moan, every belly rub, and everytime he seems extra quiet we ask "How does your tummy feel"? He gets very irritated with us, but we can't help it. We just want to know if we will be gone for the next 6 days. It's like having to go on vacation at the drop of a hat except nobody has any fun.
We had a short break after those appointments and went to the car for a snack that I had packed. Then we met with the GI, Dr. Palermo. He told us the results of Shade's fecal elastase test from last visit. Unfortunately, he is even more severely pancreatic exocrine insufficient. Any result below 100 is considered severe and Shade's was 21 this time. This is why he will have to take enzymes for the rest of his life. Fortunately, his vitamin levels looked good the rest of his bloodwork was fine. We finally got to hear what the team wants to do next, and their suggestion is an ERCP. That is where they put a scope with a camera down his throat and get a really good look at the pancreas from the inside and make sure that none of the ducts are narrow or clogged. If there are any narrow spots, they will put in a stent to help open it up and perhaps prevent attacks. They will also be able to see how damaged his pancreas really is. They want to do this scope when Shade hasn't had an attack for a while, and now would be a perfect time, but they have given us a date of October 16. It is usually an outpatient procedure, but they will have Shade stay at least overnight so they can observe him due to the risks of the ERCP causing an attack of pancreatitis. He had one ERCP back in August of 2012 and it did not cause him an attack, but this one may be more thorough or a little more invasive if they have to place a stent. I can't imagine his pancreas would be too happy about that. If it does trigger an attack, we will have to stay until it is over, so probably about 6 days. I really hope that is not the case, but we shall see. If everything looks normal, then they will reassess. I know they are trying to do everything they can to avoid a very serious surgery, but I hate all of the waiting. Don't get me wrong, I would love it if Shade could have relief without a super serious surgery, but it feels so drawn out. If the surgery is meant to happen, I want to get the big, scary thing over with so he can recover and live a normal life!
On Friday we went back to the hospital to meet the endocrinologist, Dr. Elder, and have a glucose tolerance test (mixed meal test). Shade had to fast for it, but that wasn't too big of a deal. The hard part was that they had to put in an IV. They couldn't use his port because accessing it 5 times in 2 hours would put him at great risk of infection. So, they held him down and he screamed and screamed and begged them to stop. It was truly horrible as it always is. He was such a brave boy though. He held his arm perfectly still for them. They were all impressed with how he was able to let them do their job despite his terror. After they got the IV in, he had to drink a certain amount of Vanilla Boost in a very short amount of time. He was thirsty after all of that screaming, so he was able to get it down in the allotted amount of time with minimal complaining about the taste and then we waited. They drew his blood at regular intervals for the next two hours and then he got to eat french fries. :) Dan and I had a quick lunch on the go and we headed back home. There really is no place like home. Staying in the hospital so many times over the past couple of years has made me appreciate it so much more. The picture below is before the IV was in and they had a heat pack taped to his arm to get the vein ready. He was not happy about it and had already taken his glasses off because of tears. He said "I can't play my game in this condition".
We received a phone call a few days ago and are so happy to report that his endocrine function is still normal!! That means that his pancreas is still able to produce insulin normally. Hopefully that means his islet cells are still in great shape! So, now we wait and hope that he doesn't have an attack before October 16. We are really on high alert around here since it has been 3 months since his last attack. Every moan, every belly rub, and everytime he seems extra quiet we ask "How does your tummy feel"? He gets very irritated with us, but we can't help it. We just want to know if we will be gone for the next 6 days. It's like having to go on vacation at the drop of a hat except nobody has any fun.
So, we went back to Cincinnati Children's Hospital in August. His first appointment was bright and early, so we drove up the day before and stayed at a hotel. We chose not to stay at the Radisson this time as the sleep number beds were not our cup of tea. The Holiday Inn was clean and in a convenient location. Also, with the hospital discount, the price was right. Never fear, they still had a pool for Shade so that he got to have a little fun during our stay. We also had an appointment on Friday, so we ended up staying two nights this time. It made things a little less stressful that way. On Thursday we met with the pain management specialist, Dr. Goldschneider, and also a Psychologist from the team named Dr. Lynch-Jordan. They were both very kind and attentive and willing to help in any way they could. Dr. Goldschneider even offered to work with us and Shade's doctors in Kentucky through phone calls if they can't manage his pain effectively. I have to tell you, I teared up because it was nice to feel like we had an expert on our side. Kosair hospital (where Shade usually goes during an attack) is considered a smaller children's hospital and simply does not have a pain management team. This has caused a lot of frustration for us because pain relief and management are the main reason we take Shade to the hospital when he is having an attack.
We had a short break after those appointments and went to the car for a snack that I had packed. Then we met with the GI, Dr. Palermo. He told us the results of Shade's fecal elastase test from last visit. Unfortunately, he is even more severely pancreatic exocrine insufficient. Any result below 100 is considered severe and Shade's was 21 this time. This is why he will have to take enzymes for the rest of his life. Fortunately, his vitamin levels looked good the rest of his bloodwork was fine. We finally got to hear what the team wants to do next, and their suggestion is an ERCP. That is where they put a scope with a camera down his throat and get a really good look at the pancreas from the inside and make sure that none of the ducts are narrow or clogged. If there are any narrow spots, they will put in a stent to help open it up and perhaps prevent attacks. They will also be able to see how damaged his pancreas really is. They want to do this scope when Shade hasn't had an attack for a while, and now would be a perfect time, but they have given us a date of October 16. It is usually an outpatient procedure, but they will have Shade stay at least overnight so they can observe him due to the risks of the ERCP causing an attack of pancreatitis. He had one ERCP back in August of 2012 and it did not cause him an attack, but this one may be more thorough or a little more invasive if they have to place a stent. I can't imagine his pancreas would be too happy about that. If it does trigger an attack, we will have to stay until it is over, so probably about 6 days. I really hope that is not the case, but we shall see. If everything looks normal, then they will reassess. I know they are trying to do everything they can to avoid a very serious surgery, but I hate all of the waiting. Don't get me wrong, I would love it if Shade could have relief without a super serious surgery, but it feels so drawn out. If the surgery is meant to happen, I want to get the big, scary thing over with so he can recover and live a normal life!
On Friday we went back to the hospital to meet the endocrinologist, Dr. Elder, and have a glucose tolerance test (mixed meal test). Shade had to fast for it, but that wasn't too big of a deal. The hard part was that they had to put in an IV. They couldn't use his port because accessing it 5 times in 2 hours would put him at great risk of infection. So, they held him down and he screamed and screamed and begged them to stop. It was truly horrible as it always is. He was such a brave boy though. He held his arm perfectly still for them. They were all impressed with how he was able to let them do their job despite his terror. After they got the IV in, he had to drink a certain amount of Vanilla Boost in a very short amount of time. He was thirsty after all of that screaming, so he was able to get it down in the allotted amount of time with minimal complaining about the taste and then we waited. They drew his blood at regular intervals for the next two hours and then he got to eat french fries. :) Dan and I had a quick lunch on the go and we headed back home. There really is no place like home. Staying in the hospital so many times over the past couple of years has made me appreciate it so much more. The picture below is before the IV was in and they had a heat pack taped to his arm to get the vein ready. He was not happy about it and had already taken his glasses off because of tears. He said "I can't play my game in this condition".
We received a phone call a few days ago and are so happy to report that his endocrine function is still normal!! That means that his pancreas is still able to produce insulin normally. Hopefully that means his islet cells are still in great shape! So, now we wait and hope that he doesn't have an attack before October 16. We are really on high alert around here since it has been 3 months since his last attack. Every moan, every belly rub, and everytime he seems extra quiet we ask "How does your tummy feel"? He gets very irritated with us, but we can't help it. We just want to know if we will be gone for the next 6 days. It's like having to go on vacation at the drop of a hat except nobody has any fun.
- See more at: http://cotaforshadef.com/node/475#sthash.KF5vSCkU.dpufSo, we went back to Cincinnati Children's Hospital in August. His first appointment was bright and early, so we drove up the day before and stayed at a hotel. We chose not to stay at the Radisson this time as the sleep number beds were not our cup of tea. The Holiday Inn was clean and in a convenient location. Also, with the hospital discount, the price was right. Never fear, they still had a pool for Shade so that he got to have a little fun during our stay. We also had an appointment on Friday, so we ended up staying two nights this time. It made things a little less stressful that way. On Thursday we met with the pain management specialist, Dr. Goldschneider, and also a Psychologist from the team named Dr. Lynch-Jordan. They were both very kind and attentive and willing to help in any way they could. Dr. Goldschneider even offered to work with us and Shade's doctors in Kentucky through phone calls if they can't manage his pain effectively. I have to tell you, I teared up because it was nice to feel like we had an expert on our side. Kosair hospital (where Shade usually goes during an attack) is considered a smaller children's hospital and simply does not have a pain management team. This has caused a lot of frustration for us because pain relief and management are the main reason we take Shade to the hospital when he is having an attack.
We had a short break after those appointments and went to the car for a snack that I had packed. Then we met with the GI, Dr. Palermo. He told us the results of Shade's fecal elastase test from last visit. Unfortunately, he is even more severely pancreatic exocrine insufficient. Any result below 100 is considered severe and Shade's was 21 this time. This is why he will have to take enzymes for the rest of his life. Fortunately, his vitamin levels looked good the rest of his bloodwork was fine. We finally got to hear what the team wants to do next, and their suggestion is an ERCP. That is where they put a scope with a camera down his throat and get a really good look at the pancreas from the inside and make sure that none of the ducts are narrow or clogged. If there are any narrow spots, they will put in a stent to help open it up and perhaps prevent attacks. They will also be able to see how damaged his pancreas really is. They want to do this scope when Shade hasn't had an attack for a while, and now would be a perfect time, but they have given us a date of October 16. It is usually an outpatient procedure, but they will have Shade stay at least overnight so they can observe him due to the risks of the ERCP causing an attack of pancreatitis. He had one ERCP back in August of 2012 and it did not cause him an attack, but this one may be more thorough or a little more invasive if they have to place a stent. I can't imagine his pancreas would be too happy about that. If it does trigger an attack, we will have to stay until it is over, so probably about 6 days. I really hope that is not the case, but we shall see. If everything looks normal, then they will reassess. I know they are trying to do everything they can to avoid a very serious surgery, but I hate all of the waiting. Don't get me wrong, I would love it if Shade could have relief without a super serious surgery, but it feels so drawn out. If the surgery is meant to happen, I want to get the big, scary thing over with so he can recover and live a normal life!
On Friday we went back to the hospital to meet the endocrinologist, Dr. Elder, and have a glucose tolerance test (mixed meal test). Shade had to fast for it, but that wasn't too big of a deal. The hard part was that they had to put in an IV. They couldn't use his port because accessing it 5 times in 2 hours would put him at great risk of infection. So, they held him down and he screamed and screamed and begged them to stop. It was truly horrible as it always is. He was such a brave boy though. He held his arm perfectly still for them. They were all impressed with how he was able to let them do their job despite his terror. After they got the IV in, he had to drink a certain amount of Vanilla Boost in a very short amount of time. He was thirsty after all of that screaming, so he was able to get it down in the allotted amount of time with minimal complaining about the taste and then we waited. They drew his blood at regular intervals for the next two hours and then he got to eat french fries. :) Dan and I had a quick lunch on the go and we headed back home. There really is no place like home. Staying in the hospital so many times over the past couple of years has made me appreciate it so much more. The picture below is before the IV was in and they had a heat pack taped to his arm to get the vein ready. He was not happy about it and had already taken his glasses off because of tears. He said "I can't play my game in this condition".
We received a phone call a few days ago and are so happy to report that his endocrine function is still normal!! That means that his pancreas is still able to produce insulin normally. Hopefully that means his islet cells are still in great shape! So, now we wait and hope that he doesn't have an attack before October 16. We are really on high alert around here since it has been 3 months since his last attack. Every moan, every belly rub, and everytime he seems extra quiet we ask "How does your tummy feel"? He gets very irritated with us, but we can't help it. We just want to know if we will be gone for the next 6 days. It's like having to go on vacation at the drop of a hat except nobody has any fun.
Is This Real Life? (From 7/30/14)
Have you ever had things going on in your life that were so hard that you just couldn't believe they were happening to you? Like in your head you think "this is the kind of stuff that happens to other people, not to me", but it is happening to you? That is where I am at right now. I just can't believe that my son's face is on a donation box and I sometimes see him randomly pop up in my news feed on Facebook. I have such mixed feelings when I see that. First, I smile because of how cute he is and how much I love him. Then, I get sad and angry because of the reason his face is being posted. Lastly, I feel gratitude to those of you who are helping. The ones who are "like"ing, sharing, and giving. Those who care. You see, I HATE that my son and my family are going through this, but I love that we don't have to go through it alone. Thank you all.
Life With Chronic Pancreatitis (from 7/20/14)
Hello everyone! I've briefly touched upon what Chronic Pancreatitis is before, but I haven't really gone into detail about how it affects Shade's life and our lives. Like many diseases, Chronic Pancreatitis affects each individual uniquely. That means that while he may have symptoms in common with others, they may have several symptoms that he doesn't have or vice versa. Shade is lucky in that he doesn't have much pain in between bouts of Acute Pancreatitis. He also can eat pretty much whatever he wants without additional pain in between attacks. This is not the case for all. However, Shade has frequent, sudden Pancreatic Attacks where he is in excruciating pain and must be hospitalized for about 6 days each time. Each time we go to the ER and wait for hours while they process his bloodwork to determine if his Amylase and Lipase(pancreatic enzymes) are elevated and get him admitted to a room. The worst part of the admission process is getting the IV. Shade does not cope well with this at all. Remember, he is 9 years old, but with his Autism, he is more on the level of a 5 year old in many ways. He gets so scared and sort of zones out and screams and cries and begs the nurses to stop. He has even screamed "Mommy, why are they torturing me? Make them stop!" No amount of distraction or loving reassurance helps. The worst part is that his veins are not handling the frequent use very well and so it is hard to get the IV in a good spot and keep the vein from blowing. Afterwards, the only thing the doctors can do for him during an attack is give him nothing to eat or drink by mouth, hook him up to IV fluids, and give him pain medicine. Sometimes the medicine works fabulously and other times we have to pull out every trick in our bags to distract Shade from the pain until he can get his next dose. This is exhausting and gut-wrenching. To watch your baby suffer and not be able to make it better is the worst feeling in the world. It is so unfair that this innocent child has to go through all of this.
In between attacks, he must take large pills with everything he eats. The pills are enzymes to help his pancreas not work so hard to digest his food. Due to the acute attacks, he has permanent damage to his pancreas and it no longer works the way it should. He will have to take these pills with every meal or snack that he eats for the rest of his life. That is tough for anybody to grasp, let alone a kid. When he was first prescribed enzymes, he didn't swallow pills and we had to teach him how. We were so very, very relieved that he caught on quickly and even though he gags every now and then, he takes his medicine like a champ! Sometimes he even reminds us that he needs them. smiley
In addition to all of the trauma of the attacks and the hospitalizations and the hassle of taking pills all the time, Shade has missed a lot of school due to his disease. For a kid who already has trouble socializing, this is not good. It is hard on him to have his routine disrupted. Also, he has had to miss several school field trips and class performances because he was in the hospital. It's tough because we want him to get excited about special plans, but we've learned not to play things up too much just in case he has to go to the hospital. We never know when it is going to happen. We live in constant fear that today will be the day he has another attack. It makes it very difficult to plan special things and it is heartbreaking when Shade has to miss out on fun times. Don't mention "Suessical the Musical" in our house or you're sure to produce tears as Shade laments that time that he missed it because he was in the hospital. He doesn't understand and honestly, he shouldn't have to. I know life isn't fair, but it has been extra unfair to him.
Despite all of this, we have hope! We know that there is something that can help Shade and we are striving to make that happen. You can help him live a life free from Pancreatitis by donating. We also have hope because of stories from other children who have gone through this horrible disease and come out of it living life to the fullest. The Foundation for Childhood Pancreatitis was started by several Moms of children with this disease and they are an excellent source of information and support. Shade has a short part in a video that they produced which you can watch below. To visit their website go to http://www.childhoodpancreatitis.org/
In between attacks, he must take large pills with everything he eats. The pills are enzymes to help his pancreas not work so hard to digest his food. Due to the acute attacks, he has permanent damage to his pancreas and it no longer works the way it should. He will have to take these pills with every meal or snack that he eats for the rest of his life. That is tough for anybody to grasp, let alone a kid. When he was first prescribed enzymes, he didn't swallow pills and we had to teach him how. We were so very, very relieved that he caught on quickly and even though he gags every now and then, he takes his medicine like a champ! Sometimes he even reminds us that he needs them. smiley
In addition to all of the trauma of the attacks and the hospitalizations and the hassle of taking pills all the time, Shade has missed a lot of school due to his disease. For a kid who already has trouble socializing, this is not good. It is hard on him to have his routine disrupted. Also, he has had to miss several school field trips and class performances because he was in the hospital. It's tough because we want him to get excited about special plans, but we've learned not to play things up too much just in case he has to go to the hospital. We never know when it is going to happen. We live in constant fear that today will be the day he has another attack. It makes it very difficult to plan special things and it is heartbreaking when Shade has to miss out on fun times. Don't mention "Suessical the Musical" in our house or you're sure to produce tears as Shade laments that time that he missed it because he was in the hospital. He doesn't understand and honestly, he shouldn't have to. I know life isn't fair, but it has been extra unfair to him.
Despite all of this, we have hope! We know that there is something that can help Shade and we are striving to make that happen. You can help him live a life free from Pancreatitis by donating. We also have hope because of stories from other children who have gone through this horrible disease and come out of it living life to the fullest. The Foundation for Childhood Pancreatitis was started by several Moms of children with this disease and they are an excellent source of information and support. Shade has a short part in a video that they produced which you can watch below. To visit their website go to http://www.childhoodpancreatitis.org/
How the Evaluation in Cincinnati Went (from 7/18/14)
We got back from Cincinnati yesterday and I am still tired. It was a very long day. We got up bright and early to check out of the hotel and eat breakfast so that we would arrive to our first appointment on time. We actually got there about a half an hour early, but that was the suggested time on the papers we received in the mail. We've been to Cincinnati Children's hospital a few times before, so we were able to find our way around fairly easily. Luckily, our first appointment took us back early. First we met with a geneticist who made sure that we understood Shade's CFTR mutations and how they affect his pancreas. Then we went to registration for our visit with the surgeon, Dr. Nathan. We had to fill out a lot of forms and wait for a while since we were early. There was a photographer there to kick off the start of their Pancreatitis Program. Shade was cute for the camera and Dr. Nathan explained the TP-AIT surgery to us and that the team of doctors would discuss Shade's case and review all of his history and come to a decision about the best course of treatment. Shade fell asleep while he was talking, despite having his Nintendo DS to play with. He does not enjoy these kind of appointments, but he is usually pretty well-behaved. After about an hour, we met with a Social Worker who talked to us about finances and the Ronald McDonald house and how we were all dealing with Shade's condition and the possibility of surgery. Then we had to go back to registration and get ready for our appointment with the GI, Dr. Palermo. We had to fill out even more forms and wait. We were able to talk to Dr. Palermo about the possibilities for Shade's treatment and fill in some gaps on his history. His nurse also asked some very thorough questions while Shade was impressed by the VHS tapes that were in the office. He hadn't seen any before. He made Mom and Dad feel old. LOL He was such a trouper through all of it. He was really ready for lunch towards the end, but he didn't interrupt the adults talking too often. By this time we had already been at the hospital for several hours and we were all ready to go. Unfortunately, we still had to get some blood drawn for labs and convince Shade to poop so that they could do a fecal elastase test. Neither of these tasks was accomplished easily, but we did it!! Shade got his favorite McDonald's afterwards as a reward for his behavior and for getting through those tests. All together we spent about 6 hours at the hospital with no breaks. I wish I had been better prepared with snacks and drinks, but I was under the impression we would only be there for about 4 hours. Oh well, I know better for next time. In their defense, the social worker did offer us some drinks and graham crackers, but we declined at that time because we thought we were almost done. I didn't really learn anything new at these appointments, but hopefully the doctors did. I should hear back from them in a couple of weeks and they will let us know how they recommend proceeding with Shade's health.
Getting Ready to Visit Cincinnati Again (from 7/16/14)
On June 11, we visited the Cincinnati Children's hospital for the first time in about a year. We had not been too impressed before, but they might be our only option to get Shade the surgery he needs in a timely manner. I wrote the following on my personal Facebook page after the visit:
"We got great news today! We went back to Cincinnati Children's hospital for the first time in about a year to see if they would re-evaluate Shade. They are closer than Minnesota and they accept Shade's insurance. We were surprised to learn that the doctors in Cincinnati were inspired by Shade (among other factors) to start a team of doctors and implement a program modeled after the one in Minnesota. They went to MN and met all the doctors and everything. My baby and me and Dan helped make that happen! They are going to review his files and get more records from Kosair and MN and we are going to go back probably at the end of July for a proper evaluation to see if they can help him. I honestly expected them to say they couldn't help him yet (like last time), but they have been busy since then! I am so hopeful!"
Well, it is nearing the middle of July and we are scheduled for a proper evaluation on July 17! He will be meeting with a surgeon, a geneticist, and a GI. Yes, it is the same GI that we worked with before who made a couple of mistakes. We decided to be honest with him about how we felt, and he apologized for making us feel like we were not heard. That was so nice. Also, he cleared up the gallstone issue. He showed us the imaging that was done while Shade was inpatient there back in February of 2013 and he did indeed have gallstones at that time. He said that they must have dissolved before he had anymore imaging. We are still pulling for Minnesota to be our hospital, but we feel much, much better about the possibility of having the surgery in Cincinnati. As long as my baby gets what he needs, I am fine. He is my number one concern. Always.
"We got great news today! We went back to Cincinnati Children's hospital for the first time in about a year to see if they would re-evaluate Shade. They are closer than Minnesota and they accept Shade's insurance. We were surprised to learn that the doctors in Cincinnati were inspired by Shade (among other factors) to start a team of doctors and implement a program modeled after the one in Minnesota. They went to MN and met all the doctors and everything. My baby and me and Dan helped make that happen! They are going to review his files and get more records from Kosair and MN and we are going to go back probably at the end of July for a proper evaluation to see if they can help him. I honestly expected them to say they couldn't help him yet (like last time), but they have been busy since then! I am so hopeful!"
Well, it is nearing the middle of July and we are scheduled for a proper evaluation on July 17! He will be meeting with a surgeon, a geneticist, and a GI. Yes, it is the same GI that we worked with before who made a couple of mistakes. We decided to be honest with him about how we felt, and he apologized for making us feel like we were not heard. That was so nice. Also, he cleared up the gallstone issue. He showed us the imaging that was done while Shade was inpatient there back in February of 2013 and he did indeed have gallstones at that time. He said that they must have dissolved before he had anymore imaging. We are still pulling for Minnesota to be our hospital, but we feel much, much better about the possibility of having the surgery in Cincinnati. As long as my baby gets what he needs, I am fine. He is my number one concern. Always.
Update from 7/16/2014
Update from 7/16/2014
Well, I have now uploaded all of my previously published posts to this blog and I realize that I need to get you all caught up. In February of 2014, Shade had a pancreatitis attack for the first time in 7 months and was hospitalized.
It was Valelntine's Day while he was there and Shade got a big bag FULL of Valentines from local kids. It was through the radio station "The Max". Some store bought and some hand made and all with wonderful messages of love! Shade doesn't care much about that stuff, but it touched Me and Dan. We might have gotten a little teary eyed, but don't tell anybody.
Shade was hospitalized for 5 days and we happily went home. He did have a little more pain than he usually does after we got home, but nothing we couldn't handle.
In March of 2014 it happened again. This time he was hospitalized for 6 days. We were really hoping that February was going to be a one time thing for a while, but sadly, it was not. We all got through it though.
We were lucky to skip the hospital in April, but we ended up there twice in May of 2014 and that is when Minnesota said it was time for Shade to have the surgery. The problem with that is that Shade's insurance will more than likely not pay for it since it is out of state. Minnesota is working with them, but it's not looking good.
Our other option is to try Cincinnati Children's again and see if they will consider doing the surgery. It is closer to home and his insurance is much more likely to pay there.
We would love for him to have the surgery in Minnesota because they have done this surgery more times than any other hospital and they are the experts in this area. If his insurance denies the claim, we would be expected to pay the entire amount up front. That is why we called COTA. Our precious boy deserves to live a pain free life.
Well, I have now uploaded all of my previously published posts to this blog and I realize that I need to get you all caught up. In February of 2014, Shade had a pancreatitis attack for the first time in 7 months and was hospitalized.
It was Valelntine's Day while he was there and Shade got a big bag FULL of Valentines from local kids. It was through the radio station "The Max". Some store bought and some hand made and all with wonderful messages of love! Shade doesn't care much about that stuff, but it touched Me and Dan. We might have gotten a little teary eyed, but don't tell anybody.
Shade was hospitalized for 5 days and we happily went home. He did have a little more pain than he usually does after we got home, but nothing we couldn't handle.
In March of 2014 it happened again. This time he was hospitalized for 6 days. We were really hoping that February was going to be a one time thing for a while, but sadly, it was not. We all got through it though.
We were lucky to skip the hospital in April, but we ended up there twice in May of 2014 and that is when Minnesota said it was time for Shade to have the surgery. The problem with that is that Shade's insurance will more than likely not pay for it since it is out of state. Minnesota is working with them, but it's not looking good.
Our other option is to try Cincinnati Children's again and see if they will consider doing the surgery. It is closer to home and his insurance is much more likely to pay there.
We would love for him to have the surgery in Minnesota because they have done this surgery more times than any other hospital and they are the experts in this area. If his insurance denies the claim, we would be expected to pay the entire amount up front. That is why we called COTA. Our precious boy deserves to live a pain free life.
Well,
I have now uploaded all of my previously published posts to this blog
and I realize that I need to get you all caught up. In February of
2014, Shade had a pancreatitis attack for the first time in 7 months and
was hospitalized.
This is Shade waiting in the ER
It was Valelntine's Day while he was there and Shade
got a big bag FULL of Valentines from local kids. It was through the
radio station "The Max". Some store bought and some hand made and all
with wonderful messages of love! Shade doesn't care much about that
stuff, but it touched Me and Dan. We might have gotten a little teary
eyed, but don't tell anybody.
Shade was hospitalized for 5 days and we happily
went home. He did have a little more pain than he usually does after we
got home, but nothing we couldn't handle.
In March of 2014 it happened again. This time he
was hospitalized for 6 days. We were really hoping that February was
going to be a one time thing for a while, but sadly, it was not. We all
got through it though.
We were lucky to skip the hospital in April, but we
ended up there twice in May of 2014 and that is when Minnesota said it
was time for Shade to have the surgery. The problem with that is that
Shade's insurance will more than likely not pay for it since it is out
of state. Minnesota is working with them, but it's not looking good.
Our other option is to try Cincinnati Children's
again and see if they will consider doing the surgery. It is closer to
home and his insurance is much more likely to pay there.
We would love for him to have the surgery in
Minnesota because they have done this surgery more times than any other
hospital and they are the experts in this area. If his insurance denies
the claim, we would be expected to pay the entire amount up front.
That is why we called COTA. This precious face deserves to live a pain
free life.
- See more at: http://cotaforshadef.com/node/458#sthash.bbu4Ljes.dpuf
Well,
I have now uploaded all of my previously published posts to this blog
and I realize that I need to get you all caught up. In February of
2014, Shade had a pancreatitis attack for the first time in 7 months and
was hospitalized.
This is Shade waiting in the ER
It was Valelntine's Day while he was there and Shade
got a big bag FULL of Valentines from local kids. It was through the
radio station "The Max". Some store bought and some hand made and all
with wonderful messages of love! Shade doesn't care much about that
stuff, but it touched Me and Dan. We might have gotten a little teary
eyed, but don't tell anybody.
Shade was hospitalized for 5 days and we happily
went home. He did have a little more pain than he usually does after we
got home, but nothing we couldn't handle.
In March of 2014 it happened again. This time he
was hospitalized for 6 days. We were really hoping that February was
going to be a one time thing for a while, but sadly, it was not. We all
got through it though.
We were lucky to skip the hospital in April, but we
ended up there twice in May of 2014 and that is when Minnesota said it
was time for Shade to have the surgery. The problem with that is that
Shade's insurance will more than likely not pay for it since it is out
of state. Minnesota is working with them, but it's not looking good.
Our other option is to try Cincinnati Children's
again and see if they will consider doing the surgery. It is closer to
home and his insurance is much more likely to pay there.
We would love for him to have the surgery in
Minnesota because they have done this surgery more times than any other
hospital and they are the experts in this area. If his insurance denies
the claim, we would be expected to pay the entire amount up front.
That is why we called COTA. This precious face deserves to live a pain
free life.
- See more at: http://cotaforshadef.com/node/458#sthash.bbu4Ljes.dpuf
Well,
I have now uploaded all of my previously published posts to this blog
and I realize that I need to get you all caught up. In February of
2014, Shade had a pancreatitis attack for the first time in 7 months and
was hospitalized.
This is Shade waiting in the ER
It was Valelntine's Day while he was there and Shade
got a big bag FULL of Valentines from local kids. It was through the
radio station "The Max". Some store bought and some hand made and all
with wonderful messages of love! Shade doesn't care much about that
stuff, but it touched Me and Dan. We might have gotten a little teary
eyed, but don't tell anybody.
Shade was hospitalized for 5 days and we happily
went home. He did have a little more pain than he usually does after we
got home, but nothing we couldn't handle.
In March of 2014 it happened again. This time he
was hospitalized for 6 days. We were really hoping that February was
going to be a one time thing for a while, but sadly, it was not. We all
got through it though.
We were lucky to skip the hospital in April, but we
ended up there twice in May of 2014 and that is when Minnesota said it
was time for Shade to have the surgery. The problem with that is that
Shade's insurance will more than likely not pay for it since it is out
of state. Minnesota is working with them, but it's not looking good.
Our other option is to try Cincinnati Children's
again and see if they will consider doing the surgery. It is closer to
home and his insurance is much more likely to pay there.
We would love for him to have the surgery in
Minnesota because they have done this surgery more times than any other
hospital and they are the experts in this area. If his insurance denies
the claim, we would be expected to pay the entire amount up front.
That is why we called COTA. This precious face deserves to live a pain
free life.
- See more at: http://cotaforshadef.com/node/458#sthash.bbu4Ljes.dpuf
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