We had a family meeting today with his doctors, lung specialists, nurses & other people involved with his care. The main things we brought up were Consistency - baby CJ loves and needs consistency with every part of his care. I dont like him having nurses who dont know him as well & who dont know when he needs sedation or who dont know all of the little things that help him. I asked if he could have consistency with all of his meds. I know some change daily depending on his labs but dont like when someone new comes on & changes things around.. Especially things that were working for him. Primary care - they dont do primary nursing here anymore but a handful of nurses really know him & know all of the small things about him that he likes, doesnt like & what calms him down. They said out of everyone in the PICU they always try their best to make sure he has that but they will try harder.. Theres even nurses who request to take care of him. Weekly meetings - on Tuesdays, all of the doctors round on everyone & go over whats happened when everyone else was gone but we asked if they could all actually sit down & go over his care, meds, procedures they think could help or just give their input. A lady from the home vent program said the lung specialists meet with the heart doctors every week & said they could join. Well also do meetings weekly with all of them & with one of his main nurses & maybe a respiratory therapist to make sure everyone is always on the same page & to set goals for the week. Second opinion - they will look into CHOP & call them, send his records & see if theres anything they would recommend. His doctor said they would most likely want to admit him there. We know they have a chronic lung disease program & everyone agreed that the best thing for baby CJ would be a new set of eyes. Hes almost off of the nitric & his oxygen is still 65%. Tomorrow at 10am hes going for a ct scan of his belly & chest. Hopefully that will give us some answers. The doctors will talk to the heart doctor to see about doing the heart catheter & when they think would be the best time to do it. Today they did more tests to see if he has any rare infections. After we do all of these things & if hes still not getting better thats when well probably get transferred if CHOP could even do anything different. If not, well keep doing what were doing until his lungs get better enough for us to go home. We will never give up on him. Hes gotten a lot better than he was & I know he will get even better. Its just gonna take time. I love him so much & I need him just as much as he needs me 💙💙
Posted on: Tue, 06 Jan 2015 02:29:01 +0000
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