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.