Rowan needed oxygen. It was supposed to be a 30 day deal. 30 days, then a cath and either surgery or we redirect care. Then Rowan went into shock, so they rescheduled. Then Rowan got a virus, so they rescheduled. Then Rowan got sick again, so they did a cath, decided to do his surgery, but wanted to wait a month.
Then Rowan had the surgery.
Then Rowan went on oxygen again.
We are beyond bummed that the oxygen tank is still Rowan’s accessorry to bear. It’s heavy to cart around. He hates having it blow in his nose and constantly rips it off. We don’t sleep because of said ripping.
The current thought is that Rowan is just adjusting to his new blood flow and needs a little help. In a few months he should level out and not need the oxygen, especially once this “virus” he currently has clears up.
So we are no where near that place in life where you feel like the worst is over and you are living the dream you worked hard for…which when we started those original 30 days I really thought post-Glenn would be like.
We are trying to remain hopeful, that one day Rowan will be oxygen free and up running around. One day he’ll be strong enough to hold his head up for long periods or sit up or crawl on his own. One day he’ll eat.
Until then, we are waiting on our happily ever after (where Rowan slays the evil oxygen dragon and rescues the pulmonary pressure princess and we all live in a big castle).
Once this virus thing is over, we are hoping to have lots of people over so we don’t feel so lonely and isolated. We miss other people.
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.
We miss you all too
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