Advance Care Plan - does your child have one?
We are starting very shortly to put one together for our two year old son. He is un diagnosed in that he doesn't have a primary cause for his various issues which include uncontrolled epilepsy/epileptic encephalopathy, microcephaly, gdd, pulmonary stenosis & atrial septaI defect, osteopenia and I'm sure there's more. He's also peg fed and on 24 hour home oxygen.
Whilst we don't have a diagnosis as such we have been told that our son is life limiting and that the doctors imagine that it is a degenerative condition. We have unfortunately seen that this seems to be the case as within the cast year he has lost some of the skills he had including smiling.
What I'm wondering before we go down the route of the ACP is, does it make a difference in real life?
To be honest, for us its not about the end of life care as we feel that although he has regressed, he's nowhere near ready to leave us just yet. Its more for the now. He does get a lot of chest infections which usually lead to a hospital visit (he's too complex for our regular GP's who most of the time look to me for inspiration so its more often than not a visit to the hospital to get specialist/pediatrician opinion). Our hospital don't offer open access so we always have to go through a&e which as you can imagine isn't a quick visit (unless we've been to the GP who has arranged for us to be seen at the hospital). We need to speed up visits like this as we can be at the hospital 6+ hours each time easily which impacts on us as a family, especially our eldest son who's 7 (no disabilities).
Please let me know if you find the ACP helpful or if you feel that its not worth the paper its written on.
Thank-you and apologies for the long post. X