Sunday, September 5, 2010

Wednesday, September 1st, 2010

Mommy wasn't sure what to expec, t today when it came to the Special Care program appointment. According to the website:

The Pediatric Special Care Program provides coordinated, cost-effective, and family-centered health care services for children and teens with developmental disabilities and associated complex medical condtions that require frequent hospitalizations and the expertise of multiple specialists. The program serves children and young adults with developmental disabilities and complex medical conditions, such as those related to:
Congential anomalies
Genetic syndromes
Cerebral palsy
Brain injuries
Spinal cord injuruies
Neuromuscular disorders
Technology dependency (including ventilator support, tracheostomies, feeding tubes, baclofen pumps)
Functional limitations requiring adaptive equipment

Services provided:
Outpatient assessment, management, and care coordination services, at the request of and in collaboration with primary care providers
Inpatient consultation for children with complex management and disposition issues, in collaboration with PCPs, subspecialists, hospitalists, and discharge planners
Coordination and management of interdisciplinary consultation and management services (including interdisciplinary conference and discharge planning meetings)
Education for parents and caregivers, including links to community and web
Coordination of referrals and medical appointments
Advocacy with insurers, schools and community services
Integration of pediatric care across the continuum, including care at home, in the community, hospitals, and congregate care settings
Assistance with decisions related to palliative care and end-of-life issues
Guidance with transition and guardianship issues as children approach adulthood

Mommy had been referred to the clinic after our dysphagia appointment back in July. It certainly sounded right up our alley reading about it. When we got to the waiting room looking around at the other children it was completely comfortable for Mommy - children with craniofacial syndromes, children in wheelchairs on vents, a little girl with Down syndrome. But after almost 2 hours in the waiting room Mommy was getting antsy while I was having a great time playing. When we did finally get back to the room, we were seen quickly by the resident. Mommy caught her up quickly on my previous medical history. Shortly, a male doctor joined her - also a resident - and we talked a little more. He noticed my "bonk" on my head from where I fell a few days ago. He would like to refer us on to a physical therapist for a gait assessment. As he went on to explain, many children with craniofacial syndromes have been known to have neurological issues that don't allow them to have great sensory feedback - the nerves either aren't firing correctly or the brain isn't reading the messages correctly. For many kids it results in balance and falling issues. He had me walk and then run up and down the hall. Should this be the case with me there could be several different solutions - pressure garments, orthotics or potentially even braces. Beyond that issue, he was impressed with how hooked in to the system we were - after all I have more specialists then I have kids in my preschool class.

After this discussion, Mommy was expecting the director of the program (the one she had the appointment with and had been waiting to see for two hours) to come in but apparently because I am so hooked in - there wasn't a need to. So we waved at her on our way out. It wasn't a wasted trip, though. Mommy had tried to get the special spacer for my trach to use with the inhaler at the local pharmacy with no success and the only place in town that carried it was Primary Children's. So we stopped by the pharmacy to get it filled.

Peyton Nicole Smith

No comments:

Post a Comment