Frustrated..**BBM Red, hot angry face**

OH MY GOD!!!! I was soooo frustrated today, so angry with Hamilton Health Sciences. Braden turned 18 yrs old back in October. Typically when that happens a child who is a patient in paediatric clinic's will be "graduated" up into an adult clinic. We have been going through the process of changing Neurosurgeon's and even his paediatrician. Slowly though, as all these changes can cause great stress on a family who has worked so closely and has come to trust and value the professionals who take such great care of your child. We have been seeing these surgeon's and doctor's for years, there has always been a mutual respect between all of us. We have always felt safe knowing they are all there if we need them. As we approach adult life with Braden, its exciting. He is at the age where he is making some of his own decisions for his health, and that's kinda nice..takes away a bit of the stress as decision makers for Paul and I. But with that said...WHO are these new people who are going to be helping Braden with his decisions? How do we know they will be as good as the ones we have had since day one? What if they are just not as caring, understanding or "protective" of Braden's needs?
Yesterday, the Orthopaedic clinic at McMaster called to inform me that Braden will NO longer be provided with services in their clinic. He is know an adult and Dr. Peterson can no longer see him. So i responded with..."Ok, that's fine but who will he refer Braden too?". I was hoping there would be a wonderful adult Ortho-surgeon at Hamilton General who would be following him. Maybe send over all Braden's medical records, have a chat about Braden's history..considering for christ sakes its HUGE!!! and complicated!!! She proceeded to tell me that there is NO ONE...Hamilton does not have any orthopaedic surgeons that they can refer Braden too. PANIC..FEAR and anger all hit at once! HUH?? I don't understand? WHO will follow him then? We have had the security of seeing a surgeon YEARLY to follow his progression, be sure that his scoliosis doesn't interfer with his lungs or cause any other further problems. All this running through my head, I can feel my heart racing...seriously, I was panicking. Here is another service we are loosing all due to the fact that he turned 18...
How could they do this? Just throw a family out of their clinic without any follow up, any feedback and most importantly ANY other doctor?
The receptionist (who probably could hear the panic in my voice) told me that if there is any concerns we would typically just go to our family doctor and then he/she would send us too a ortho-surgeon as needed. Two problems..
1. I DON"T want any Cambridge Ortho-surgeon's going anywhere near him. I don't think there is any surgeon here with the type of experience needed for Braden.
2. We are in the process of getting a new family doctor for B because his paediatrican only see's children, which Braden is no longer!!
SO know, we're fucked!! All these new faces, or lack thereof...and no one know's anything about him..nothing, nada!
Let's just say this conversation didn't go as easy as she was hoping! I kept her on the phone for sometime, making her explain to me where other surgeon's were in the area. What happens if there's a problem, who do we call? ETC...
I also had her talk to another doctor in the hospital who know's Braden to see what she has to say about his transfer. We will also call his main doctor at MacMaster and find out from him what we should be doing. Thank god, this doctor has actually been with Braden since the beginning as well and he doesn't need to stop seeing Braden just because he's becoming an adult. This is comforting...at least we will have a familiar face for awhile!
SO,this leaves me fustrated, angry and a bit afraid. I have always had the comfort of knowing if we needed anything or had any concerns we could just call them and they'd see him immediately. NOT the case anymore...and that's scary.
I'm just waiting to hear back from the secretary and see what the other surgeon had to say about Braden being discharged from their clininc. I don't care really that he isn't going to be going to MacMaster anymore...he was becoming one of the older kids and wasn't really comfortable sitting in the waiting room with all the little one's. Its more that the transfer to an adult doctor wasn't better...with Braden's history and severity of injury I would have expected better from them. This isn't exceptable, this is exactly where the system fails people who are handicapped and are not able to realize when there is a problem with their health or body. Or if their family isn't capapble or knowledgable enough to pay attention to their loved one's growth and development. I see so many adults who don't progress, or go to long without a much needed surgery due to the fact that no one was paying attention. No one noticed their spine curving further or their arm is losing more function. SEE panic!!!
Well the good news is that I find this unacceptable...therefore, we won't stop until i am satisfied. Thankfully our family is on the right track with teaching Braden about his own care and the importance of paying attention to his own wellbeing. It just frustrated me...how do you go from being so well taken care of, to just being dropped and told there is no other "adult" surgeon's in the area?
I will keep you updated, hopefully all works out well and once again we are in the safe graces of a wonderful Orthopeadic surgeon~