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.
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