Family

Sadie has spent the last two days and nights completely unplugged from her heart pacer. Her rate does go very low at night but it's expected and it's still doing it's job. The transplant team is confident in the rate and rhythm and would like to have Sadie moved down to the pediatric floor or discharged in order to begin clinic time. Unfortunately the transplant team is only one aspect of Sadie's care team and the CICU team isn't as confident in her rate being so low and want to continue to monitor her. The current plan is for Sadie to have her first heart cath on August 4th. The hope is that her pacer wires can be removed during that procedure as well. Depending on the outcome of the cath she will either return to CICU or go to the Ped floor. 

We are at the point in this marathon that waiting is the very hard part. Sadie is done being hooked up to the same pole and wires, she misses home, misses her dogs, and just misses some sort of normal. Her team is working hard- very hard- to get her to the point that everyone is happy and feel that she'll be safe to take the next steps.

Today Sadie got a very special visit. Typically CICU does not allow dog visits, but they pulled some strings and got a visit from a labradoodle named Finley- Sadie loved getting Fin time and got a special snuggle. It was a beautiful gift.

The transplant team also requested that Will and Harper come down and go over care moving forward. Transplant effect the entire family and they make sure to care for the entire family. It's been an extra special couple of days with a visit from Harper and Will both days. Yesterday we went over medications, activities and general life moving forward. Today we went over mental health and care for our family. 

I know I usually update you all about Sadie's journey- but today I want to mention Harper too- I hugged her tight yesterday and my mom heart shattered when I finally got to see her again. This entire experience has been a whirlwind on all of us- and Harper has felt the brunt of some blows too. Lately she's struggled a little with having Sadie and myself gone from her for an extended period, she's also struggling with having such a major event dominate her life too, in a world of being ten and in this storm- she's just trying to find some normalcy. I go to God and ask that he keeps her and Will lifted up. Will is also a huge champion for us- the table was flipped and he's not missed a beat with picking up all of the slack that I drop. 

I pray that we're almost at the close of our CICU journey but I am well aware that we're looking at another half week here at least. It's the feeling of being in a revolving door and wondering when it's going to be time to get out- I think we're approaching our stop- we love and miss you all.