Tuesday March 14th

Patrick has had a busy few days! To say that he is taking this well would be an understatement. He truly has blown us away with his little body's resilience!

Dr. Lam came by yesterday morning and checked his drain. She was very impressed with the way he was digesting the brain fluid on his own, so she clamped the drain for the day to see if his brain could handle it. Last night he had an MRI that confirmed he no longer needed the drain to do the work for him, his body was ready! The drain was removed last night, 72 hours post op. We were prepared for it to take 7-10 days at least! The removal of the drain itself was flawless, but getting a stitch put in to close it up was a little traumatic for P (and more so for me). They put this topical lidocaine stuff on it and I'm not sure it worked AT ALL. I think we may have scarred the neurosurgery resident forever. 😂 it was a rough few minutes but we rallied!

We have had a physical therapist and an occupational therapist visiting us daily and working with P. They are all appalled at his strength and capabilities post surgery. I can honestly say I don't think he lost any motor function or strength- he is the exact same kid that went in. We were, again, prepared for temporary left side paralysis until we could retrain his brain. We refer to his left side as "lefty"... and lefty is looser and more active than ever. Another prayer answered!

All of that said we still were planning on going to Shirley Ryan, their inpatient rehab here. (Denver people, basically their version of Craig Hospital). After his evaluations this week, the therapists think that we would be just fine to go home and do some intensive rehab at Children's CO. (Also Shirley Ryan doesn't have any availability on their Pediatric Floor until March 27th, so the decision was sort of made for us).

As of now we are simply waiting for the go ahead to get discharged and we will head home to CO for some intense therapies out there. It will likely be outpatient. We will go for multiple hours per day but get to go home at night. They said this could be a few weeks and then we will resume our normal therapies.

Things are changing hourly around here so this isn't set in stone. If by some chance a bed opens at Shirley Ryan, we definitely wouldn't pass it up. We will keep you all posted as things progress the next few days!