Rowan’s Glenn has been scheduled here in Tulsa. We will go for the pre-op appointment on June 4th. On June 11th, Rowan will have a chest xray and blood work done, and on June 12th, we’ll get step 2 of Rowan’s 3 Step Heart Repair DONE!
My biggest fear is making it to June 12th. The surgeons wanted to give Rowan several weeks from his last hospitalization (sound familiar?) before surgery. That makes SO much sense…if we aren’t talking about Rowan. Rowan has been home at the longest…15 days. So we now have to make it 26 days without incident. You can see my anxiety about that.
So I’ll do what I can. I will continue to do meds, respiratory therapy, shots, physical therapy, and switch out oxygen tanks and just hope that taking the best care of him I can will be enough.
Doc has decided to take June off. It’s a good thing because I am about at my end. Yesterday I was so exhausted my body just quit. I got really sick and have been trying to recover today (thanks Mom for coming to my rescue). I only have to make it 14 more days before I won’t be alone taking care of him. I think I can do that.
26 days. We have to make it 26 days.
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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