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.
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