In Alabama

We're settled in AL, surrounded by our loving family. Finally away from all the drama llamas that populate the slums of California :)

Brandon's health has definitely seemed to take a turn for the better. He's breathing a little bit better, and eating some good fatty southern food!

We're working on getting him set up with Medicaid still, and it's hard to do anything without any portable oxygen. So we've decided to try and buy a used portable O2 concentrator with the donations from all the sweet wonderful people we've received!! Hopefully we can find one that's below $800 and actually works good! It would make things so much easier.

We're finally moving!

Brandon and I are finally moving! An unexpected move, too. We'll be moving back to AL where my family is, so we'll be able to give him better care and closer CF center. UAB is one of the top 10 lung transplant/CF centers in the nation, so we're hopeful about them.

Brandon's been out of the hospital for a little while now, he goes between feeling crappy and feeling good. He's been feeling a lot better lately, hopefully it will last. We don't have internet at the moment, just a random unsecured signal that floats by sometimes, lol, so we haven't been able to update very much.

update

Brandon's condition is a lot better than when we came in. He's feeling back to his old self, a little chest pain here and there, but overall much better. They're getting him a home bipap system that will help with his breathing, and giving him a list of available lung transplant programs in hopes of one program that will accept him.

We'll be going home within the next few days and then have to apartment search all over again. Depending on which transplant center accepts him, we'll have to move to their location, because when you undergo a transplant, you have to go back and forth to the hospital every few days, and we can't afford driving 3+ hours to a far away hospital!

Hopefully I will get the job through IHSS and we'll be able to survive on our own. Most of you know our financial situation is terrible. The only income we have is his SSI which is only 854 a month, and impossible to live on in Cali! We will find a way to make it work though, and have our own place soon!

He was also denied a scooter/electric wheelchair from his insurance, so we'll have to find an alternative way to pay for one, or hopefully get one donated. If anyone knows of a cheap scooter/wheelchair, or someone willing to donate to a needy boy, we would forever be grateful!

Akira!

Brandon got a call from Akira's manager or whatever he is, and they set up a date to come see Brandon tomorrow at 3pm. He's really excited! I'm happy for him! Also he gets discharged in a week, unless he gets really bad (which isn't likely) and has to be put into ICU, but he's doing alright for now. They're still deciding what antibiotics to use, and what course of action to officially take, but as of right now we'll be out in a week.

Update

Our good news that I posted on facebook was quickly shot down today by his doctors. They explained that the alcaligene I mentioned another CFer having, wasn't the one keeping Brandon from getting a transplant. It's a different one called Xylosoxidan and it's pretty much untreatable by any antibiotic known to man.

So they said they're giving Brandon another round of antibiotics, then sending him home because there's nothing else they can do. It feels like being told "we're guna do the last bit we can then just wait for you to get worse and die" because nothing else can be offered to better his condition. You'd think with all that mankind has come up with these days, you'd have more in the medical department..

But we're just hoping for the best, Brandon has his good days and his bad days. We're guna start him on a healthier diet so that'll hopefully make him feel better in general, and introduce some new vitamins and home therapy for CF. 

Update

They decided not to put the filter in Brandon, they say the clot will go away on it's own and it's not a major concern right now. So that's somewhat good news.

Brandon is doing alright, he's pretty stressed out right now and it's effecting his health. His mother and her girlfriend have threatened to steal our kitten that we've raised since she was 3 weeks old. Well, on Saturday around 11pm his grandmother came home and found the kitten was missing.

This was Brandon's first real animal that was all his. He helped rescue her from the street and the retarded boys who were trying to kick her around. He helped nurse her back to health and raise her into the cute kitten she is now, and his mother decides it's her right to break in and steal her. Or have one of her asskisser friends do it for her. Either way.

So we're both pretty on edge about that, but whatever happens, happens. His mother has threatened to kill her and hang her from a telephone poll (verbatim), but then she would be facing prison time for animal cruelty. We'll have an investigation unit from the spcLA team helping us hopefully get her back, so then Brandon can be happy and stress free again!

Also for legal purposes, I am not accusing his mother or her whale of a GF of stealing our kitten. I'm just stating what we suspect, and what was told to us by his mother.

Either way with the evidence that's been racked up over the last week, the case would be incredibly strong. So I suggest that if any of the thieves are reading this, she should be returned in the exact condition she was taken in. Alive, furry, all 4 legs, tail and all.

Brandon and I are also thinking about offering a reward to whomever can return her safely and looking about for some way to advertise her disappearance so we can also advertise the reward for her return.

Filter

They're putting a filter in Brandon's vein/artery today to stop the clot from traveling, so hopefully this will go alright and be as least painful as possible.