Ramping up Home Comfort Care

May 29, 2021

Hey there. Have a Zaner update for you all. Warning...it's a bit heavy. If you saw Zane's video a couple of days ago, you'll be pleased to know I took Zane to see his neurologist/neuro oncologist yesterday morning. I should preface this by saying Zane was also put on oxygen the night before and he was in rough shape at this appt. His breathing was labored and he was very uncomfortable being out of bed. Based on that (and other clinical factors), it was of his doc's opinion that Zane not be forced to undergo a battery of tests at this time. He's concerned how Zane would have difficulty tolerating being put through it all, only to possibly come to a conclusion that Zane won't be able to be treated for because of his deteriorating condition. His doc truly thinks that Zane's newest symptoms are all indicative of his disease progression and brain atrophy. He's very saddened and shocked at how things have gone. He thinks Zane's trajectory is nonsensical.

So it's been decided (for now) to ramp up Zane's comfort care at home. His hospice team was brought into the discussions and they jumped into action yesterday, bringing an oxygen condenser and introducing some new meds for comfort (including morphine).

I was asked at this meeting of all involved in Zane's care what I wanted. I let everyone know I wanted whatever that is supposed to happen to happen. If Zane is meant to get better, them I'd like to see signs of that so I know what to fight for and focus on. If he's not meant to get better, I want Zane to know it's ok to let go. Obviously, I want to see the former happen, but we are going to let Zane rest and let him and the Universe works things out for a bit.

We received this survivor box in the mail this week from St. Jude. I can't think of anything more appropriate to receive at this time. Zane is a survivor. He's overcome so many challenges. And no matter what happens, he has brought me more joy than I knew possible and I will carry him and his purpose with me every day. #MakeZaneBetter