Friday, July 01, 2016
Update on the Port and the MRCP (from 12/12/14)
Hi everybody! I'm sorry I've taken so long to update, but really there wasn't much to say. Thankfully (knock on wood), Shade has not had an attack of pancreatitis since the end of May! If he can keep this up a little longer, it will be the longest he has gone without an attack since this whole thing began! We are always worried that it could happen at any time, but we try not to let it ruin the fun of life.
When I last updated, we were still dealing with issues with finding out if Shade's port was being flushed properly and if it could safely be accessed by a 1 1/2 inch needle. Well, Dr. Wiesenauer called us back again and told us that he spoke with the nurse at Flaget who had been doing the monthly flushes of Shade's port and he was confident that she was doing them correctly. He also called the vascular access team at Cincinnati Children's and spoke with them about it all. They had no knowledge of the incident during Shade's ERCP where the team could not access his port. There was nothing in his chart to indicate there had ever been a problem, and they assured Dr. W that they would be fine using the port in the future even if it was deep. At our request, Shade's next port flush was scheduled at Kosair Children's Hospital. We felt like this would give us an answer once and for all. Also, they use a numbing medicine on the skin before inserting the needle, so we really wanted to start having it done there. I'm happy to report that all went well at that appointment and his port was successfully flushed with a 1 1/2 inch needle. They said it was very deep, but they didn't think it was unsafe and they saw no reason why it could not be used when needed. His next flush will also be at Kosair on Dec. 22. It isn't a fun experience, but the next time he is admitted to the hospital, we will know it was worth it.
Shade had an MRCP (a kind of MRI) yesterday (Dec. 11) at Cincinnati Children's. He's had this done a couple of times before, but always right after or during an attack of pancreatitis. They wanted to see results when he was feeling fine for a while. When the person in scheduling called us to set up the appointment, she said that it would be without sedation. I told her that he'd never had one without sedation and that I couldn't guarantee that he would be able to stay still and complete it. She said she would make a note in his chart. I had a bad feeling about this, but if they wouldn't listen, I wasn't going to argue about it. When we arrived yesterday, several of the staff questioned why he wasn't being sedated and all I could tell them was that it was scheduled that way despite my suggestions. They seemed a little annoyed at the person who did the scheduling and I was too. Shade was really happy that he didn't have to have an IV and he liked that he could watch a movie on the special goggles that he was going to wear. I was allowed in the room with him. They strapped him to the table and put something over him that was like a turtle shell. They put headphones on him and goggles. He handled all of that very, very well. They could speak to him through the headphones, and he could hear his movie through them too. We told him beforehand that the machine would be loud but that he could have his movie loud too and that the machine would not hurt him. He seemed ok with it, but I knew there was a 50/50 chance it would work out. They gave me earplugs and they left the room. Shade did fine with the bed moving in and out of the machine and the goggles and headphones and responding to their questions. Then the machine started to make loud noises and Shade got upset. He yelled for them to stop and turn his movie up louder. This seemed to work for a few minutes but then he was screaming for them to "Help! Get me out of here!". They stopped it and unstrapped him and he was crying. Poor baby. :( I told him that he did a great job and that it was over. He was scared because of how loud it was. The staff informed me that we would not be charged for the few images they were able to get and that we would need to reschedule another MRCP with sedation. They couldn't sedate him that day because he had eaten. The next one is scheduled for February. All in all, it was a waste of time and gas, but now I know to always make sure they sedate him for anything like this. I thought being still would be the issue, but sudden loud noises scare him too, like hand dryers in public restrooms. I should have insisted on sedation from the start, but when a professional acts like they know better, it's hard to hold your ground sometimes.
When I last updated, we were still dealing with issues with finding out if Shade's port was being flushed properly and if it could safely be accessed by a 1 1/2 inch needle. Well, Dr. Wiesenauer called us back again and told us that he spoke with the nurse at Flaget who had been doing the monthly flushes of Shade's port and he was confident that she was doing them correctly. He also called the vascular access team at Cincinnati Children's and spoke with them about it all. They had no knowledge of the incident during Shade's ERCP where the team could not access his port. There was nothing in his chart to indicate there had ever been a problem, and they assured Dr. W that they would be fine using the port in the future even if it was deep. At our request, Shade's next port flush was scheduled at Kosair Children's Hospital. We felt like this would give us an answer once and for all. Also, they use a numbing medicine on the skin before inserting the needle, so we really wanted to start having it done there. I'm happy to report that all went well at that appointment and his port was successfully flushed with a 1 1/2 inch needle. They said it was very deep, but they didn't think it was unsafe and they saw no reason why it could not be used when needed. His next flush will also be at Kosair on Dec. 22. It isn't a fun experience, but the next time he is admitted to the hospital, we will know it was worth it.
Shade had an MRCP (a kind of MRI) yesterday (Dec. 11) at Cincinnati Children's. He's had this done a couple of times before, but always right after or during an attack of pancreatitis. They wanted to see results when he was feeling fine for a while. When the person in scheduling called us to set up the appointment, she said that it would be without sedation. I told her that he'd never had one without sedation and that I couldn't guarantee that he would be able to stay still and complete it. She said she would make a note in his chart. I had a bad feeling about this, but if they wouldn't listen, I wasn't going to argue about it. When we arrived yesterday, several of the staff questioned why he wasn't being sedated and all I could tell them was that it was scheduled that way despite my suggestions. They seemed a little annoyed at the person who did the scheduling and I was too. Shade was really happy that he didn't have to have an IV and he liked that he could watch a movie on the special goggles that he was going to wear. I was allowed in the room with him. They strapped him to the table and put something over him that was like a turtle shell. They put headphones on him and goggles. He handled all of that very, very well. They could speak to him through the headphones, and he could hear his movie through them too. We told him beforehand that the machine would be loud but that he could have his movie loud too and that the machine would not hurt him. He seemed ok with it, but I knew there was a 50/50 chance it would work out. They gave me earplugs and they left the room. Shade did fine with the bed moving in and out of the machine and the goggles and headphones and responding to their questions. Then the machine started to make loud noises and Shade got upset. He yelled for them to stop and turn his movie up louder. This seemed to work for a few minutes but then he was screaming for them to "Help! Get me out of here!". They stopped it and unstrapped him and he was crying. Poor baby. :( I told him that he did a great job and that it was over. He was scared because of how loud it was. The staff informed me that we would not be charged for the few images they were able to get and that we would need to reschedule another MRCP with sedation. They couldn't sedate him that day because he had eaten. The next one is scheduled for February. All in all, it was a waste of time and gas, but now I know to always make sure they sedate him for anything like this. I thought being still would be the issue, but sudden loud noises scare him too, like hand dryers in public restrooms. I should have insisted on sedation from the start, but when a professional acts like they know better, it's hard to hold your ground sometimes.
The Port Saga Continues (from 10/24/14)
One of the most frustrating parts of dealing with Shade's illness is the lack of communication between doctors and the pressure it puts on us as parents to make sure that his care is synchronized. This involves calling several doctors, usually on the same day, and leaving voice mails and waiting. Lots of waiting. Then you finally get in contact with one of the doctors and they say that this particular issue is something that needs to be addressed by Doctor X, Y, or Z, but not them. Then the cycle continues until you get the doctor you need to answer the question you need an answer to or write the order that needs to be written or simply call in a prescription. When your child has about 20 different doctors or therapists that need to be contacted on a semi-regular basis, all of this phone tag gets extremely frustrating and makes a sane person want to pull their hair out! All of this technology is supposed to make it easier to share a patient's information, but when the doctors don't even think to share with each other and just want to push responsibilities off onto another doctor, it doesn't make a darn difference. When we were waiting in the waiting room during Shade's procedure at Cincinnati Children's hospital, a member of the VAT (Vascular Access Team) came out to speak with us. She assured us that nothing was wrong, but that they were unable to use his port during the procedure and had given him an IV in his hand while he was already under sedation. She said that the blood that came out of the port was brownish and sluggish and that she did not think it was being flushed properly. She also said that it was not easily accessed with a 1 and 1/2 inch needle and that a 2 inch needle would be needed to safely access it. They do not keep that size at the hospital. Therefore, if Shade needs to have his port accessed at their hospital in the future, he will need to have a port revision. I was so sad for Shade that this was happening, but also panicky about what to do. I told her I didn't even know which doctor to contact about it and she asked "who is your case manager?" I said, "What is a case manager?", and she replied, "The person who manages your son's care and organizes his information and doctors.", to which I laughed and replied, "Well then, I guess I am his case manager! Honestly, to have this magical creature called a case manager sounds amazing! Anyway, I have spent the past week, YES WEEK, trying to get this situation handled. I called the surgeon who put in the port, Dr. W, only to be told I needed to call his GI who put in the order for the port placement and then told that I actually needed somebody from Cincinnati Children's Hospital to call the surgeon and speak to him. So, I contacted Cincinnati Children's only to be transferred twice and then leave a voice mail. Luckily, she called back and we told her the whole story and she said she would have somebody call the Dr. W's office. On Wednesday, we had heard nothing so we called the surgeon's office to see if he had been contacted by anybody from Cincinnati Children's and they said yes he had, but he would not be in the office again until Friday to return my call and let me know what they said. So, here we are at Friday and he did call me! :) That is the good news. The weird news is that he said he spoke with Dr. Lin, the surgeon who performed Shade's ERCP in Cincy and he told Dr. W that he was fine with him leaving it the way it is! I was so flabbergasted, but Dr. W was very nice on the phone and spoke quite frankly with me and told me that if Flaget has never said they have a problem flushing the port and they are a tiny hospital, but Cincy has a difficult time with it and refuse to work with it and they are a large hospital that it says something about their vascular access team and he needs to get to the bottom of it. He said he doesn't want to put Shade through a needless surgery and I commend him for that. He told me to find out the name of the person who has been flushing Shade's port at Flaget and give him the phone number and email and he will find out and then get back into contact with Cincy. He made it sound like the VAT team in Cincy was being petty and kind of incompetent, but I have to wonder if the Flaget nurse is the one who is incompetent. No offense to her, but Flaget is a tiny hospital and they don't have the best reputation. That's what I get for trying to make a monthly visit less stressfull by being closer to home. I'd really like to start getting his port flushed at Kosair Children's Hospital because they are used to doing it on kids and I'd also like for them to make sure (through ultrasound or whatever) that the port has not moved out of place. The saga is not over and I am beyond angry that this has happened at all. Dr. W told me that this is very abnormal and he will be looking into it. I guess I will just wait until next week for him to talk to more people and if he doesn't call me back, I will call him back. The anxiety that this is causing me is tremendous, but I am trying to stay strong for Shade and do what must be done. I will get answers and this will get resolved.
Update from 10/16/14
Hi everybody! Sorry for the late update, but it has been an incredibly long day and we just now got settled into our room and I have a minute to type. Shade did fine during the ERCP and so far no pancreatitis!! We were really scared about that. This means that we will hopefully go home tomorrow sometime. :) That is the good news. The bad news is that they could not see as much as they wanted to and they think he has a stricture in his pancreatic duct. There are a couple of different ways that they might try to fix that, but that is for another time. The other bit of bad news is that they were not able to use his port. Apparently, the surgeon who installed it put it in really deep and they would need a 2 inch needle to reach it properly. This hospital does not have any 2 inch needles because they feel that having a port that deep is too risky. There is a greater chance of not putting the needle in the port all the way and the medicine going under his skin instead of into the port. If we want to continue our care with Cincinnati Children's and we want them to use the port, we will need to have the port moved. I don't think that will happen at this visit either, but we will know more tomorrow. I wish I had more answers about stuff, but now you guys know what I know. I will update sometime tomorrow. We are all exhausted.
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.
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