Friday, July 5, 2013

Country Folks in the Big City

     School is done for the year and summer has finally arrived what means a bit of a break for all of us. Both my kids have done well in school this year and they deserve credit for that!

 Also a good time to get as many medical appointments done as we can so both school and work are interrupted as little as possible! With my son recently diagnosed, the whole circus is in full gear again.

     Our first official day of summer holidays was spent at the Calgary Children’s Hospital to have MRI’s done of both hands and wrists. My daughter and her boyfriend tagged along and spend part of the day shopping in the close by mall. 
We left our house at 7:30 am and came home at 9:30 pm. A long day for 2 twenty-five minute MRI’s.  Thankful that it is done though, and thankful for the thorough care we receive.

     I read and hear many horror stories about healthcare and how people are disappointed or let down by it. I can honestly say I am grateful, very satisfied, and amazed by the level of professionalism and knowledge each and every one of the medical professionals we have had the pleasure of meeting with, displayed.  Perhaps the most important reason I am so happy with the care we receive is the fact that we always feel we are being heard, we always are reassured and we are always treated well, with respect and empathy. My kids are two young people and are being treated that way, they are not a case, a number or a file, they are two young individuals , each their own self and I feel they are being appreciated for who they are, not for what they have.

      So, all in all, a long day, but hopefully the results of the MRI’s are positive and give us a good point of reference.

     Next on the medical agenda was a clinic appointment, two days later. The positive thing about having 2 children with the same condition is you can occasionally combine appointments, so that’s what we did and that was a bonus! Boy child had an appointment at 9:45 , followed by an appointment with the OT at 11:00 and the girl child had her appointment at 10:30, so that was all booked very efficiently!
Brother and sister filling out their check lists!

     I have not seen huge improvement when it comes to the swelling in my boy’s fingers since he started medication a month ago. The doc agreed and added another drug to the mix. She started discussing the potential use of a biologic in the future for him as well, but before we get to that there is a certain trajectory that needs to be followed and she needs to give the current medication a fair chance before we can consider another approach. 
 For now he will be using Methotrexate, Prednisone, Naprosyn, folic acid and now Sulfasalazine was added to the mix.  A referral for the ophthalmologist was made and blood work was ordered.
The OT (Occupational Therapist) did an initial assessment, it will be more thorough with our next visit, since we were a bit pressed for time this time around! She did give some helpful tips and we discussed the potential use of night splints in the future.  

     The girl child is doing well. There was a tiny bit of swelling noticeable in two of her fingers, but that was it. Since there were never MRI’s done of her hands, the doctor  wanted them done before she enters adult care so they were ordered.She is starting to prepare to transition to adult care. 
Again, the thought of that makes me sad and melancholic, because I think we will have a hard time when it comes to allowing another doctor in to our lives and saying goodbye to the fantastic lady who’s been treating my daughter ever since she was diagnosed. 
Come to think of it, another advantage of having two children with the same specialist: we get to hang on to her for just a bit longer! Overall a positive visit for my daughter so we will keep on doing what we are doing!

     Next appointment is set for September, for both of them. We shall see what that will bring!

     For the afternoon my kids were asked if they would be willing to volunteer as “guinea pigs” for medical students. Medical students were to practice physical , MSK  (muscular skeletal  if my medical terminology is correct!) exams of the upper extremities in a pediatric patient. From the Children’s Hospital we moved (approximately 5 km, if even) to the Health and Sciences Centre, which houses a Medical Skills Centre.

     If you picture a country girl finding her way around in a big city you can imagine some slapstick like actions and I would have to admit you would be pretty accurate in your assumptions, but that’s a story all by itself and I will spare you that! 
We made it to where we were supposed to be and that’s what matters!

     As it appears, medical students usually practice their physical exams on actors. They were nervous and excited when they were informed they got to practice on actual patients. Both my daughter and my son were escorted to exam rooms, each accompanied by a physician ,who was there to score the formative exam the students were doing and to provide them with feedback. I sneaked in the exam room my son was in, just because I was curious to witness the process. 
It was great to be part of, nice to see what they focus on, and how they interact with patients. It seems to me it is a very valuable part of their education because books and professors will teach you a lot but real life patients and experience are probably what will teach you the most. I can only imagine how awkward it must be to actually touch people, that you have no relationship with, for the first time. You have a couple of seconds to build a relationship, then you have to focus on your findings, ask questions, observe, and stick to what’s relevant! There was 10 minutes allowed for each exam and there were 9 students examining each child ( 18 students all together!).
We were treated to a nice lunch and the kids each got a gift card to Chapters as a token of appreciation.

An interesting experience for all of us, and guess what; we even made it back home to our peaceful homestead in the countryside in one piece! 
Home sweet home!

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