Thursday, 30 August 2012

Treat or Manage?

Middle one's creative side
Sunshine time (although not too much with some of the meds we still have, oh and transplant in general)
We had a really good meeting with our respiratory doctor yesterday. She asked who we were going to use for general paeds in a few months once we move away from being under Dr brain the size of planet's care. I nearly cried. I don't want to see general paeds, I want Dr Brain for as long as we can. He knows little one better than any other doctor and I have always felt completely secure, safe and at peace with him. I am very (or maybe extremely) proud to call him our doctor and I want to stay with him forever, but I think that will not be the case as we move towards the management of little one's ongoing issues.

As transplant gets further away we are moving to the management of little one's issues such as respiratory, ENT, Gastro, physiotherapy, occupational therapy. Booking in regular bronchoscopes, grommets, planning for cleft repair and the change over for the peg. It feels weird but great at the same time. We are at the other end of the BMT process nearing our 12 months post date and I can not believe that it feels like yesterday but 10 years ago all in the one sentence.

One of our previous general paed doctors would say to me when they were trying to figure out what was wrong with little one... 'let's hope that it is treatable and then easily managed'... I understand that sentence more than ever know (maybe not the easily bit though, this young man is a lot of work, although so so so worth it, his happiness, strength and health is the best reward).

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