My new years resolution for 2013 was to reduce our hospital stays to 2 total per year. Well we already passed this number by mid February. I guess I should think about a new resolution:)
Jagger had been hospitalized twice for aspiration pneumonia and atelectasis and once for rhinovirus. The second aspiration pneumonia was bc we went home too fast after his rhinovirus. He kept vomiting for three days after every feeding despite only half strength. Lesson learned. Either we stay longer and wait till he tolerates his feeds for a few days adjusting up and down while keeping him hydrated on IV but risking further exposure to other bugs or go home on IV which is another challenge in itself bc our hospice doesn't provide IV fluid. We are trying to negotiate with them. Poor boo. His lungs need a rest!!
Since we were in the ICU at the end of January, we had to posptoned our trip to Akron for the EPI trial. We are schedule to go at the beginning of March now. It will be the "final" visit for the trial, but we still have to go every 3 months or so for follow up visits as long as we want to stay on the drug and it has not been approved by FDA (probably until end 2014 at earliest). We are trying to work with the team in Akron, to have 2 of the 4 yearly follow up done in Atlanta, that would be a tremendous help for us!
I have to say though finally after 15 stays folks at the hospital are finally starting to get things together. They follow our instructions, warmly welcome our ER protocol and love our two page medicine sheet. We no longer have to say anything. Nurse comes in and automatically asks about our medicine sheet. Either she heard about it from another nurse or remembered from last time! I guess we have made quite an impression! With over 30 doses or so a day you have to have things written down! Anyway they love it! Our instruction/ medicine sheet consist of two pages which are laminated/ in a plastic sheet protector. One has a table which lists his medicines by time and dose. The other sheet lists all the Meds together by total dose per day and bulleted instructions regarding his feeding schedule, and other important information regarding his care. We developed this sheet as a quick reference for our nanny or anyone else who would have to care of him in the event shall anything happen to Sebastien or myself. I am also working on a true care manual but needed a cliff note version for immediate care.