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bigbird

By bigbird
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bigbird Founding Father

bigbird 60,513

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Positive for staph aureus. Hematology, Infections disease, and the pediatric team want to remove/replace ASAP. Surgery wants to wait and try to treat the infection and try and save the port. Our hematologist will win that battle. She's a pitbull when it comes to James. 

I'll update again later.

Sincerely, thank y'all for letting me lean on y'all. I appreciate the post and PMs from my friends. 

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aubiefifty Founding Father

aubiefifty 16,769

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prayers for your family and your son especially bird. i would buy him a video game off amazon and have it sent to a safe addy for him if you allow it. i imagine that and books take up a lot of his time. i think madden has a new game coming out. you message me a "safe" addy and i will do it if it is out or as soon as it comes out. or a different game with your approval. let me know. no special treatment on here expected. i would just like to brighten the young mans day up. heck i would give up my auto rookie chris davis kick six card and that is one of my favs..............

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Maverick.AU Founding Father

Maverick.AU 13,279

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13 hours ago, bigbird said:

Positive for staph aureus. Hematology, Infections disease, and the pediatric team want to remove/replace ASAP. Surgery wants to wait and try to treat the infection and try and save the port. Our hematologist will win that battle. She's a pitbull when it comes to James. 

I'll update again later.

Sincerely, thank y'all for letting me lean on y'all. I appreciate the post and PMs from my friends. 

We’re always here for ya Bird! Great to hear that James has a great Hematologist. Having a doctor like that, that does anything and everything in their power for their patients wellbeing, is truly a blessing. Much love buddy!

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TigerCatcher Collaborator

TigerCatcher 182

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I was completely undone by that picture...gotta' ask what's the dog's name?  He/she is doing some outstanding work there, probably deserves a raise in Scooby snacks.  Praying over Little Bird and his caregivers in Powder Springs, GA.

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kingfish Veteran

kingfish 73

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It is so hard for a parent to have to deal with big medical issues with your children. It is hard on both. My prayers to the Father you wisdom, great medical treatment, peace, and comfort for all ... asking in the mighty name of Jesus. 

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Tigerbelle Founding Father

Tigerbelle 5,299

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Very sorry to hear that your son is back in the hospital again. Sending prayers.....for James, for you and the rest of your family, and for his medical team. 

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augolf1716 Founding Father

augolf1716 21,109

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17 hours ago, 3rdgeneration said:

Prayers for James, Bird family! I hope he starts to feeling better soon! Are you sure he's yours? He's pretty darn handsome!!! :Sing:

 

Just kidding! 😉

 

Trust me he takes after his Mom

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bigbird Founding Father

bigbird 60,513

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59 minutes ago, augolf1716 said:

Trust me he takes after his Mom

Good looking, talented, and strong-willed...yep!

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aubiefifty Founding Father

aubiefifty 16,769

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22 minutes ago, bigbird said:

Good looking, talented, and strong-willed...yep!

bird i bet he has you and your sig other confused. lol i mean he older than dirt................grins

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bigbird Founding Father

bigbird 60,513

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Waiting till we get the initial culture final reading to make a determination on treatment vs surgery. We should have that by this afternoon. Surgery say that after reading the ultrasound he has pretty much exhausted his available neck/upper chest veins and that's why they don't want to do a replacement. He's had port catheters in his subclavian, internal and external jugular on both sides and all are showing signs of scarring. They are afraid of further damage to them. They told us we are treating him to frequently and using the port too much and might need to stop his prophylaxis treatments and only treat him for severe bleeds. Yes, the same necessary, permanent disability and possible death preventing treatments. That makes a whole lotta frickin sense, huh?

To exacerbate things, since he was diagnosed with CRPS (complex regional pain syndrome) on our last admission, the docs don't want him to be on opioids so they are just giving him Tylenol and tramodol (which is like tic-tacs for him). He's still have pretty bad breakthrough pain but they told him he just needs to manage it better through deep breathing, guided imagery, or medication. He literally looked at Amanda after they left and said, "WTF".   

Since it's covid season, he can only have one parent and no visitors. I typically stay with him because I have  medical background but couldn't this time so Amanda is with him and we're trying to tag team the docs and their decisions.

So to recap,

James is in bad pain

Docs aren't managing pain at all

No decision on treatment or surgery

Veins show scar tissue and are worn out (at 14)

Can't leave the room

Only one parent and no visitors allowed

 

But on the bright side...

 

tenor.gif

And I got to play 3 hours of uninterrupted Super Mario Bros with my daughter last night followed up by Wii sports resort where I dominated her in ping-pong...and was embarrassed in bowling.😁

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