We’re updating early because it’s already been quite a busy day.
If you’re following our Stories, you have probably already seen today’s updates.
It started early this morning. The ICU team had Mom & Dad up at 7am to sign consents and prepare…
but Avery was able to sleep until they actually took her to the OR around 10:45am.
Once inside her stomach again, they found the same hole as last Thursday had opened back up.
They used epinephrine, then cauterized, and then sprayed to seal it.
This process will most likely need to be repeated within the next week. More importantly, we were given a diagnosis:
Watermelon stomach is a condition in which the lining of the stomach bleeds, causing it to look like the characteristic stripes of a watermelon.
It’s also called GAVE (Gastric Antral Vascular Ectasia).
Funny thing is, an IG follower diagnosed Avery with this LAST FRIDAY!
She asked several questions and looked at pictures we sent… and said she was 99% sure it was GAVE.
We asked our BMT and GI Teams both dismissed the suggestion. And, well, here we are today.
That being said, we’re starting the process of looking for a GI Team that knows about, and can treat, GAVE.
We have messages out to our social worker, palliative care team, and insurance case worker.
We’ve already mentioned to at least one member of the BMT team that we’re considering moving.
With the diagnosis, we now have the ability to find a place where she can be treated properly. We need an incredibly talented GI team for the duration of her treatment with GAVE, which is a very rare disease caused by one of the conditioning chemo medicines.
We’ve already paid the first referral fee of $1,150 to Boston and are not sure how many more we’ll have.
In case we don’t say it enough, we are SO VERY GRATEFUL FOR EACH AND EVERYONE OF YOU!
This IG community has been invaluable to Avery and our family.