That's a good idea, did you have any help coming up with the care plan, or did you docs just sign off on it? Jimmy's dev. ped. wrote a letter to the docs on the PICU outlining everything about him (amount of feeds and times, size of trach and vent settings, medications and dosing schedules,all the things we would tell them but with a docs signature behind it. It didn't help much as instead of giving him his senakot every night they upped the dosage and just gave it when he got constipated. He's been on this for three years now and as long as we give it every night we don't have many bouts with constipation.
Why do they feel the need to change everything? His regular docs have been working with him for three years to get everything sorted out so now in a matter of days they know enough about Jimmy to make all of these changes.
Its just very frustrating.
Anne, mom to Jimmy (4) Infantile Axonal Neuropathy, trach, vent dependent, g-tube and now spinal fusion with growth rods. ( A very straight little boy