Care Plan Meeting

Good Evening Warriors,
Today we went to Wesley's care plan meeting where we talked to his Care Coordinator and his Geneticist in depth about his disease and they answered questions from a long we had prepared. We also filled out his treatment paperwork to send to the pharmaceutical company. Wesley will get assigned a case worker from the company, who will help set up getting his enzyme replacement, called Elaprase, shipped to the hospital.

Next Thursday, we have a meeting with the General Surgeon because Wesley needs a port inserted into his chest so he doesn't have the pain of a new IV each week. The infusions will be weekly and done at Children's Hospital until they know he is 'reaction free'. Then the pharmaceutical company approves an oncology clinic for his weekly infusions that is closer to home. The geneticist is also going to schedule Wesley's 'base line' appointments with those initial infusions, so we'll be staying overnight to avoid driving to Little Rock twice in one week. 

Base line appointments are to determine where Wesley's heart and lung functions are so we can watch and treat them accordingly when/if we start to see a decline. Wesley got a cardiogram today, which is an ultrasound of the heart. They will be calling with the results tomorrow. Soon we will be setting up an appointment with the lung doctor.

The good news: Wesley's case worker from the pharmaceutical company already called to get the pre-authorization going and is sending a Welcome Packet. She was so nice and helpful, but I still couldn't help but be sad. She will also be the one that approves and works with the oncology clinic for Wesley's infusion treatments that will be closer to our home.

Also, Friday is International MPS Awareness Day!
Please wear purple and join in support for Wesley and all the other children who have this heart breaking disease. If you do, please posts your pictures to instagram and facebook using the hashtags #wesleysMPSwarriors #wewearpurpleforwesley #MPSAwarenessDay #wesleyswarriors

If you use these hashtags, I will feature your pictures on my Saturday blog!!!!

P.S. Sorry if this is choppy typing; I've been nursing Ava the entire time only using one hand for most of it!