Sunday, October 25, 2015

A Game of "Telephone" and it's for sure Broken!

For those who are new to Jacob's Healing Rooms - I'm Jacob, I'm 11 and I live with severe Crohn's Disease (as well as a few other medical conditions) and an ostomy. I'm told that my disease is refractory - meaning that it doesn't respond to the treatments they've tried. Yesterday was a trip to the OR to find out if the Stelara injections I'm taking in hopes of ending my 3.5 year flare, and to hopefully get an explanation for the increased Crohn's Disease symptoms I've been having since late spring.

There's a game in kindergarten that we used to play called Telephone. Person 1 would come up with a "message" and the message would be whispered from one kid to the next until it got back to the teacher who would say it out loud. It was very rare that the message was the same as the original version. One of the downsides of having a lot of different specialists involved in my care, even within the same department, that there is a greater chance for errors in communication to take place. Communication is key to improving my health. For example, a few of the dermatology drugs can be used in Inflammatory Bowel Disease treatment, so any changes my dermatologist wants to make for my psoriasis could impact on the IBD, and vice versa. All of my treatment providers (neurologist, cardiologist, dermatologist, GI, dietitian, pediatrician, surgeon) need to be kept in the loop as to "what's going on with Jacob this month". Even within the department, I rely on my messages to be relayed accurately to each member of the GI team involved in my care (nurse, fellow, GI). But the more players involved, the more this line of communication has the potential to be messed up. It happens more than you would think. Friday's Operating Room trip is the perfect example of the necessary information being relayed accurately.

Things started well. The blood lab had the forms for the requested pre-op blood work, so, all was going as planned. I got ready for the procedure and was waiting for the OR nurse to do my final pre-op assessment. When she arrived she read off the chart "so you have a diagnosis of Ulcerative Colitis". Umm, no. I have a diagnosis of Crohn's Disease, which is an Inflammatory Bowel Disease like Ulcerative Colitis but can effect the entire digestive tract from the mouth on down. Ulcerative Colitis tends to be restricted to only the colon, and considering I haven't had a colon for almost 3 years... I have Crohn's. I'm sure it was a sign of the way the day was going to be. Thankfully, my mom has more patience than I do and politely corrected the diagnosis.

Then it was time for the GI doctor that I've never met to come out to talk to me about the procedure. Not that I need to have it explained, I've been through it only a dozen times. Literally. You know it's going to be an interesting day when the doctor doing the procedure had the wrong reasoning relayed to him/her. "So you're here today to have a look to see if we can do a reconnect surgery (JPouch)". Whoa. Wait a second. At no time in the past several clinic visits have we talked about the JPouch surgery. It's often not recommended for people who have severe, uncontrolled Crohn's Disease because if you develop Crohn's in your JPouch, you'll be losing more intestine (and we need all the GUTS we can get. Get it? - Sorry for my sick sense of humor). In fact, when we had looked at this possibility over a year ago, the surgeon had said that he would NOT do it and would highly recommend that I don't find someone else to do it. It was absolutely confusing to both my mom and I why we were all of a sudden talking about a surgery that has been turned down and never again discussed. What really should have been communicated is "we are here today to see how well your medication is working for you and to see if we can find an explanation for your continued symptoms". That's only a bit different than the surgery reasoning. Then, the doctor had asked to have my NG (nasal-gastric) feeding tube to be replaced which I was under, because I have extreme anxiety of anyone shoving anything up my nose and into my stomach. No Ng Tube was sent down to the OR, so they had to go hunting one down.

I had the procedure and the OR Nurse in the Recovery Room prepared my Discharge Notes. There was a key piece that hadn't been communicated - I was supposed to be admitted after the procedure for cardiac observation. The nurse had to call around to find out if this was indeed the actual plan.

When I did get to my room, there had been a lack of communication in ordering my Feeding Tube formula, so I had to go without. Not really a big deal, since I went home the following day, but if the original plan had been followed through on - to keep me for a few days after the procedure - it would have been more of a deal.

Communicate - the act of sharing messages between individuals. It's one of our basic human needs. In healthcare it's an absolute necessity. I rely on my healthcare providers to help me get back to being the best Jacob I can be (at least physically). If the communication within the department and then with other doctors isn't accurate, then it's my health that suffers. I need my specialists' medical help. I need them to communicate their plans to me in detail and with other departments that their changes might effect. I need to be able to participate in my health care and communicate my experience, since I'm the one living this disease. And I need to make sure that my experience is really heard.

I'm trying to stay positive. I'm trying to focus on the bigger picture. I'm enjoying working on my fundraising project and making some really great friends along the way. And that's what the bigger picture is all about - seeing the world and the difference that you can make and going for it. Hopefully I'll have a better health update soon!

And a HUGE THANKS to everyone who continues to offer me their support. It means everything. It really does. Every message I receive helps me to keep my spirits up, so thanks for sharing so much kindness with me.

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