So yesterday was one of the more trying days of this experience. I got a phone call that was horrible. Matt got a phone call that was not. Basically, we were told Rowan couldn’t come home because he was too sick. Then we were told that he couldn’t come home because he’d be too much work because he needs medication every hour to two hours and that’s too much for us to take care of.
Today…plan is that he is coming home Monday!
So…
He is going to be a ton of work. I will be taking care of him 24/7 and giving meds every one to two hours until we can make his med schedule more manageable. That said, we are going to appreciate every OUNCE of help we can get.
Check out the CareCalendar for details!
Fingers crossed, we are going to have him home soon.
Our son, Rowan, was born with Congenital Heart Disease and later diagnosed with Cystic Fibrosis. He had 2 open heart surgeries, 5 heart caths, and 2 additional surgeries. Realizing that despite fighting for him, Rowan was never going to get better and that he was hurting, we made the decision to change our fight from a long life, to a beautiful end to it. Hospice was a true gift and a beautiful time for our family. We said goodbye to our son when he was 7 months old.
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