Saturday, August 30, 2014

Open Letter to Seattle Children's Hospital




Dear New Higher at Seattle Children's Hospital,

Congratulations on your new job at Seattle Children's hospital. You have picked an magnificent place to work at. We spend a lot of time at Seattle's Children's hospital. You see, my husband and I have 5 children, 4 of our kids have juvenile idiopathic arthritis specifically psoriatic arthritis. This disease has presented itself with lots of complications. So not only do we frequent the hospital a lot for appointments (At one point, we were there 4 days a week), we have had to do a lot of emergency room visits and too many to count hospitalizations, sometime weeks on end. I know this hospital like the back of my hand. I can tell you who makes the best grilled cheese sandwiches, when and where to get the hottest tastiest fries (1 am in the cafeteria in case you wanted to know). What Child's Life Specialist is the best at calming a very frighten little girl who is afraid she is going to die when the anesthesiologist "gasses" her (gasses is her word) for a procedure. I also could hit you up with the right time to go to the sibling play room. What hallway offers you the best private place to cry. Who does the quickest blood draw (Hector hands down. He works M-F 11 am to 7 pm worth the drive to return to Children's Hospital if you have a reluctant child who needs a blood draw). Where in the depths of the hospital has cell phone reception. What front desk person loves their job and interacts with families well. What security guard after hours will go fetch your vehicle for you when your arthritis is flaring and you are unable to walk the distance. We interact with some of our doctors, nurses, medical assistant outside of the hospital. We like them and consider them an extended part of our family. They see us at our very worst and sometimes at our very best.  My point is, we know Seattle Children's Hospital very well. As an outside observer we see the flaws in the system at Seattle Children's, but also the good. For the record, yes, we have had a few problems at Seattle Children's. Those problems were quickly handled and taken care of. As the third party observer for the most part everyone that works at the hospital loves their job or very least likes it very well. So again, Congratulations on your new job at Seattle's Children's Hospital. 

As I stated, we spend inordinate amount of time at Seattle Children's Hospital. My children have a chronic disease something they will  have to live with for the rest of their lives. My children are intelligent. They are able to educate you about their condition because one day they will be an adult. They will have too know this information. It is best to start now from day one. By the time the kids are teenagers, they are almost completely self managing their disease. It is their body, their disease. They know how they feel, what has happen since the last time we were here for appointment, what medication they are taking and what they are allergic too. Please stop looking at me wanting answers ignoring the fact there is a young adult in the chair trying to answer you. Ask the patient the questions. Quit pretending the patient is not even in the room with us. As his parent my job is to listen to his answers. I am there if one of my children need guidance, but I only will speak up unless they ask for help or they get something wrong (which at age 15 & 16 does not happen much). For Godsake, please do not tell me this is the way things are done in this clinic. You have been on the job for less then a week. You have no idea how things are done in that clinic. We have been coming to this clinic for over a decade. I can tell you right up front you are not going to go far with your refusal to listen to the patient. Him asking for a list of the medication that is in his hospital records as current taking medicine is not breaking any rule. He is asking for everyone's benefit including you. The list was about 75% incorrect. Now he knows he has to get with one of the nurses at his regular appointment to have his medicine list updated. Yes, that is a rule at Seattle Children's that the doctor or nurse has to do that now. Oh you did not know that because it is your first week at the hospital? Yep, I get it, huge learning curve that is why active listening is so important. Like I said, this is not our first time to the rodeo. We know how often our doctor sees us. We are gearing up towards surgery a year from now. When I asked when he needed to be seen again and you replied," not until his surgery" even though you had no idea what you were talking about, is just another check mark I have added in my head against you. . As I said, our appointment our appointment schedule is with every doctor. We have to do how to orchestrate these appointments because this disease brings us to critical sub-specialist. So not only do we see rheumatology, but we have regular exams with G.I., Oral Surgery and Ophthalmology all because of the JIA.  So yes, I did have to go over your head ask the doctor directly when he wanted to see my child again because I knew you were so incorrect with your answer. If you do not know the answer, the only correct answer is, "I do not know I will have to ask". I know it is only your first week, but you will learn how hard it is to get into see this doctor.If we had listened to you and not followed through with making an apportionment for an year as you told us, you would have delayed our child's surgery by a year. You personally would be responsible for my child being in pain for an additional year. That does not bode well with this Mama Bear. Just so you understand, we will get along fine until you have crossed the line. My children our my first priority. Please reflect on this period of time, you are in training for a reason. Listen and if you are still confused ask, ask the patient, ask the parent if you are not sure how the interaction should go. If you are still confused ask your co-worker, ask the Doctor. They are all great people and they want to see you succeed, so do we.




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