Cotinuity of Care ... a lesson from our cardiology appt.

Before I start my gripe I have to share GOOD news!! Kyleigh's heart looks GREAT! So great that the cardiologist did not feel that she needed an echo!!! After looking at her echo from January he said that he was not worried about the mitral valve leak because it was very insignificant. He gave us a letter of clearance for our neurosurgery which is 5 days away and we are off and running - hopefully toward the end of the race!!! Notice I said "HE"... and that our cardiologist is a "SHE"... yes we will get to that in a moment. We actually ended up seeing Dr. Tim Bricker.

Ky was very cute. She was unsure of Dr. Bricker in the beginning but by the end she let him carry her around and when he asked for a HUG at the end... she puckered up and kissed him right in the mouth!!! We all died laughing... in our house Hugs and Kisses come together! So... be forewarned- when you ask Ky for a hug there will more than likely be a kiss on the end! I was floored!! Troy was funny too... he told Ky... "oooooooooooooooooh I am gonna email JOE and tell him you are cheating on him!!!" OMG hilarious!

Bricker says that they will continue to watch Ky for a while because its a pretty common thing for the AV Canal repairs to start leaking in the mitral or tricuspid valves or to end up with something like an RVOT obstruction. He also said that Kyleigh has a higher risk of that because during her surgery they had to resect a muscle mass which meant that her heart really looked more like a Tetrology of Fallot heart than an AV Canal. If you will remember back when I was pregnant this is the term that they were SO concerned about. They looked for it at every US. We already knew this was a possibility because Dr. Eghtesady had explained that to us after surgery. He said that most kids will not start showing signs of this until they are around 6. We have a long time to hold our breath on that one. So... we will continue to go to the cardiologist every 6 months unless they find something else.

Now to my vent. What ever happened to continuity of care? Our appt yesterday was scheduled with DR. COTTRILL.... did we get to SEE DR. COTTRILL ... well hell no we didn't. Did anyone call to tell us she wouldn't BE THERE? NO. Am I a little miffed about that... YES. If wanted to go to a practice where we would end up seeing just any old person when we went then I would find another practice. As nice as Dr. Bricker was he still had to take time to READ her chart and figure out WHO she was and WHAT we were there for. Can one REALLY assess a person situation having NO background on them? I think not.

Now I know I am anal retentive, OCD and everything in between. I openly admit that. Dr. Bricker is the head of the Children's Hospital. Any other person would have been happy to see Dr. Bricker and not that we weren't... he is a fine doctor... great with Ky... nice guy... I just do NOT think it is any patient's best interest to see one doctor for an entire year and THEN have another doctor walk into the mix. I can understand if this was not preventable... like the doctor moved out of state or something... but just to show up to an appt and end up seeing someone else without being informed of what was happening?? That really makes me hot around the collar.

Then I think about this... what can I do about this? A big fat nothing. So I will sit here on my blog... and quietly bitch to my readers and to myself to make myself feel better but really there is nothing to do. I cannot change the system. The only thing I can do is fight for a better experience and better care for MY child. And THAT is what I intend to do!