Bella the 10 year old with SCID, Hirschprungs, dwarfism, and recieved a bowel transplant in the last August passed yesterday.
Normally she wouldn't be on here, but it's her mother who is the OTT twat.
Bella had been air transferred to Sick Kids (Toronto) from their home in Saskatchewan to have the surgery to connect her bowel around June 1st. She was sent in a month early due to pneumonia and needed post transplant specific care to rule out/treat GVH and BOOP which is a type of organizing pneumonia that is generally only an issue in people with very low immune systems. It's also quite tricky to treat and can linger for quite a while and flare up later if the opportunity presents itself.
She was in 4 days, then was treated as outpatient, staying at the RMCH again (great charity). Readmitted the 6th. Mom as per usual makes shit all about her.
June 26th. Kiddo is still upbeat after a lumbar puncture, bone marrow biopsy and a probably (video assistant -VATS) lung biopsy with a chunk taken out to analyze. Still on 3-6 types of antibiotics. She's such a sweetheart, Mom was busy kvetching about needing me time, as we saw in earlier posts.
Turns out not graft vs host or BOOP! Which is great. But they still didn't know.
No wait. Scans suggest is BOOP or CMV. BOOP is treated with massive doses of steroids, which, of their wrong and it is CMV, it'll obliterate what's left of her ability to fight infection. BOOP can be really patchy on xray and you'd have to biopsy *exactly* the right spot of it to firmly dx it.
Kiddo had a rapid response called on her in ICU. Took a bit, she stabilized.
The 4th Mom decided to post she wasn't going to come back and post until she had better news.
Which is Hella fair, it's exhausting. But she pops right up in the comments, keeps right up with those, and posts again on the 7th, giving an update, but also pulling a Dani and saying she was just not posting *AnYtHiNg*.
- I'm only emphasizing that sarcastically, bc she never really paused her insta had the daily pop up and kept commenting.
Some were simply all about me, me,me, and go fund us, and buy our Merch! Which OK fine, but it just seems so tasteless.
Like go and sit and spend what time you have with you daughter. If your son is here, please take him out for some 1:1, while Dad stays with Bella.
As of the 9th she was stable(in ICU), so pretty Rocky still.
They put her in medically induced coma, intubated, with massive steroids, in a hope the fibrosis in lungs might clear up and give her some lung function back. Apparently this can happen post bone marrow transplant which she had at a young age for her SCID. BUT it's still pretty rare.
Can't snark too hard on these last posts, it's too close to home to imagine. She really is posting Christian scripture pretty hard core, but,again, most times I'd say lean on your faith if it's there, but she feels like it's virtue seeking.
Upside in the photos ask you can see of Bella is her arm, and all her stuffies. Definitely a bit above that Archie's Cow of a mother.
11th is talking about power of prayer, and how it helped Bella have tiny improvement and stay stable. 13th is much of the same, but seems to realize she may lose her daughter, only posts about how SHE feels when asked for update about Bella.
Bella passed on the afternoon of the 14th. It says "peacefully in our arms", so I can only hope they finally made the choice for comfort care only, and that the poor Lil brother finally gets a chance at a normal life. Which I doubt, bc I see Mother as being so dedicated to being a # MedicalMom for 10 years, that it wouldn't surprise me if LIl Dude starts having issues when they get home. Gotta get that praiseworthy Mom attention anyway you can, right? The poor family.
Hopefully soon she'll find something else and let Bella's story simply reside on insta for others to see, and doesn't start documenting Lil man's every move.
ok
Our Munchie f/m friend FragilePrince was a huge follower and commented regularly. Atleast theirs is polite and empathetic.
broncosopy shenanigans. AKA *HELLO! LOOK AT ME! Are you looking‽ Me Time for ME!*
Whats with these trolls? A kid just died and you pull this shit? don't make fun of a child who just died, or child who is bald and a little person, no matter how wierd their skin looks from steroids and post transplant issues. Ffs.
Anyways. That's pretty much it for Bella and her family. Mom's got a go fund me for funeral and transportation costs up already, that's fine. But the first pic in daily was just of her and Lil man with big smiles. I am worried about him, much like I worry about Xalia now that JanJan is separated from her man.
(Did you know *he* has Chrohns?) /sneed
