u/marlkavia

Husband with Marfans - dissection advice

Hi everyone
My husband (49M) experienced an aorta dissection three days ago. He had emergency surgery as is currently recovering in ICU. There has been some damage… his kidney function is low and he is experiencing paralysis, though he is regaining sensation in his legs every day. They currently have a spinal lumbar in.

He will be in hospital for a while. He has also previously had an aortic valve replacement and a descending aorta graft.

To be honest, I don’t think he was receiving the most thorough aftercare. Yearly appointment with cardiologist and monthly INR tests. On blood pressure meds etc but I was surprised he was not more closely monitored.

Still, this seems inevitable.

I just wanted some advice on what people would recommend in terms of care and lifestyle modifications now following a dissertation? Obviously heavy lifting is totally out. But any other suggestions? How often should he get his BP checked at GP? What kind of exercise?

Thank you so much.

reddit.com
u/marlkavia — 10 days ago

I’ve been thinking a lot about babies who need a high amount of sensory input to get to sleep. My 6mo likes to be jiggled a ridiculous amount with a seriously firm pat on my bum. My daughter liked to be swung so hard I felt I had to hold on for dear life else she would fly out of my arms. Obviously my children are sensory seekers haha.

What does this mean for the sensory seeking babies that are sleep trained? Or the ol “drowsy but awake”. How do we expect so much of babies?

It seems unreal that the stimuli my babies are seeking to cross that sleep threshold could be denied. How many babies lose what they innately need?

reddit.com
u/marlkavia — 4 months ago