You could never tell by the look of her that she’s “sick.”
Avery’s been up playing, dancing, and smiling.
She did PT, plus IVIG, and had an overall great day!
Not to mention, look at her face!
Can you see it?
Those extra fluids causing the swollen cheeks and eyes are gone.
She did cough up a few blood-tinged loogies overnight and this morning, but nothing too bad.
Her GI Team said that they may be due to the cauterized area from yesterday and nothing to be concerned about.
Speaking of yesterday’s procedure, her HEMOGLOBIN HAS BEEN STEADY EVER SINCE!
The GI Team wants to see another 24 hours of steady hemoglobin numbers and then we can talk about moving out of ICU.
Moving. That’s a whole other topic.
We were able to secure an important contact at Boston Children’s that directed us to both Leukemia and BMT.
Their intake coordinator called and has connected with our BMT team.
Plus, in addition to talking to our patient advocate (palliative care) Dr and social worker, we also have a Care Team Meeting tomorrow.
All of Avery’s collaborative care teams in one room. Forced to communicate and focus on Avery as peers.
We’re looking forward to seeing what comes from this meeting.
All departments have been made aware that we’re looking to move.
As an aside: We love most of our BMT team. The nurses and NPs we see every day have become like family.
But, we have had to request a new primary doctor and ask not to have one specific NP again.
This is being fully transparent about where we are with Avery’s current care.
We need her to be fully seen as a patient AND a person.
We have a lot of tough decisions to make in the week ahead, as well as try to make the most of Christmas since it could be our last time together for a while.
Please keep lifting Avery up. That her gut continues to heal and the bleeding doesn’t return. That her hemoglobin stays steady, fluids stay off, and she can remain stable longer than a few days.
Also, lift Mom & Dad as they continue to talk to the team, other hospitals, and each other to decide what’s best for Avery going forward.
Everything we’re doing is for Avery.