HELP NEEDED

[Andrew MacLean]

Carleen

There is no reason why routines in a care establishment should stop your daughter having the eye care she needs. If their routines prevent proper care of their residents, then their routines ought to change.

I know that you know this, but if you have any more trouble of this sort, I'd escalate immediately to the care commission.

Every good wish

Andrew

[Ali Akay]

Hi Carleen

It sounds like a bandage contact lens which stays on the eye continuously for several weeks may help with her symptoms, but, from what you've said, inserting a lens may be challenge. Has the hospital suggested this at all? This is very different to wearing a sighed lens for KC, and inserting them is relatively easy, perhaps with a local anaesthetic in her case.

[Carleen]

Hi Ali
We have a check up at the eye clinic tomorrow (Friday in New Zealand) so here I am in the office researching my questions and making a list. I'll add your idea to it. Yes, inserting a lens would be a mission - probably sedation and restraints would be needed so probably not an option. Her eyelids are like clamps!!

Hi Andrew
Your comments are also very valid. The care giver who has been doing her meds while Jennifer is at day base is coming with me to the hospital so hopefully the message will get reinforced. I'm also going to meet with the manager of the residential home and go over Jennifer's care plan. I'm sure I can get them to comply - it may just take a bit of gentle reminding from me but I hope not. Probably a visit to her normal GP is also in order. Her repeat prescriptions come through her so getting the correct information relayed to the pharmacy is also an issue. We'll get it sorted out soon I'm sure - we are now 1 month in so it's early days yet......

I'll start a new post after tomorrow's appointment and let you know what the next steps are.

Thanks guys.
Carleen