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[homersapien 11,371]

1 hour ago, bigbird said:

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...

 

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.😁

Damn.  Just Damn. 

I am so sorry to hear that.  I sorry that I haven't been active enough on this forum to have stayed caught up, but what is the underlying medical problem?

And what is about CRPS - something I've never heard of  - that precludes treatment with opioids?  (I agree about the Tramadol.)

Praying for the best.

[augolf1716 21,123]

2 hours ago, bigbird said:

strong-willed...yep!

She would have to be

[bigbird 60,523]

12 minutes ago, augolf1716 said:

She would have to be

[bigbird 60,523]

51 minutes ago, homersapien said:

what is the underlying medical problem?

And what is about CRPS - something I've never heard of  -

Severe hemophilia B with inhibitors

 

https://rsds.org/telltale-signs-and-symptoms-of-crpsrsd/

[McLoofus 35,182]

2 hours ago, bigbird said:

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".

WTF, indeed. I've had football coaches tell me to rub some dirt on it with more compassion. Jeez. 

Thanks for the update. Tell James there are a bunch of weirdo Auburn people ready to egg some Teslas and European luxury cars in the MD lot right outside his window. Just say the word. 

[3rdgeneration 6,469]

Prayers continue for James today. AND, evidently, his doctors need a lot of prayer as well. Surgeons are the worst when it comes to compassion. 🙄

[StatTiger 3,188]

Heart goes out to you and your family. Continuing prayers for James.

[bigbird 60,523]

On 6/23/2020 at 4:08 PM, TigerCatcher said:

I gotta ask what's the dog's name?  

Dexter

[Barnacle 9,064]

Still thinking about you guys...

[ChltteTiger 649]

This too shall pass. Your AU family is pulling for you, your wife and James!

[gctiger 931]

Prayers sent to the Big Tiger upstairs! 🙏🙏🙏  Peace be with your entire family   

Sorry I’m a little late on this one. 

[AUMASTERS 555]

Prayers for James and the whole family. 

[ToraGirl 5,498]

On 6/22/2020 at 10:05 AM, bigbird said:

Admitted last night.  Waiting on cultures, but is looking like a port infection.

Appreciate any prayers lifted for us. Thank you.

Bird, I'm so sorry to catch up now to your news. Deep prayers from Yellowstone and lots of love. James...you are the epitome of resilient overcoming. This is for you and your superhero parents. Philippians 4:19 & Numbers 6: 24-26. ❤🦋🌍

[gr82be 14,423]

Praying for healing and comfort for James and your family Bird. So sorry he is going through this. 

 

James 5:15

And the prayer offered in faith will make the sick person well; the Lord will raise them up. 

[Quietmaninthecorner 1,945]

Oh man,  I am so sorry to hear about this.    You must be a wreck.

From someone who lives in pain,   no meds  really help  unless  it puts you to sleep.   I manage pain through distraction.  When you are just laying in bed thinking about the pain   you feel it sooo much more.  He probably doesn't feel like doing ANYTHING,  so find something that doesn't take a lot of effort that he truly loves top do.   maybe ...video games.  Chatting with his buddies online.   Something to stop him from thinking about the pain.    For me any solid distraction  is 4 times as strong as any meds  (or at least any meds that don't just knock me out). 

Wish I knew some magic words that would help.  

[bigbird 60,523]

Getting discharged. He is gonna have to be on antibiotics for the next 12 days. He'll be hooked up 24 hours a day but at least he's home. They decided they couldn't do anything for his pain due to the CRPS and basically told us we need to find some way to handle it.  Besides the Lyrica he's on most research shows there's not much available... legally 😉

 

Thank you for all the prayers and support. We really appreciate all the support.

[augolf1716 21,123]

5 minutes ago, bigbird said:

Getting discharged. He is gonna have to be on antibiotics for the next 12 days. He'll be hooked up 24 hours a day but at least he's home. They decided they couldn't do anything for his pain due to the CRPS and basically told us we need to find some way to handle it.  Besides the Lyrica he's on most research shows there's not much available... legally 😉

 

Thank you for all the prayers and support. We really appreciate all the support.

Need any help I do still have my contacts

[McLoofus 35,182]

11 minutes ago, bigbird said:

Getting discharged. He is gonna have to be on antibiotics for the next 12 days. He'll be hooked up 24 hours a day but at least he's home. They decided they couldn't do anything for his pain due to the CRPS and basically told us we need to find some way to handle it.  Besides the Lyrica he's on most research shows there's not much available... legally 😉

Thank you for all the prayers and support. We really appreciate all the support.

Okay, glad you guys are open to nontraditional treatment options. 

Glad he's going home!

[bigbird 60,523]

4 minutes ago, McLoofus said:

Okay, glad you guys are open to nontraditional treatment options. 

Now we just need Texas to be a little more open...

[McLoofus 35,182]

9 minutes ago, bigbird said:

Now we just need Texas to be a little more open...

*Too bad you're on on the non-Colorado side of Texas.

At least you Texans and we South Carolinians can cut it up while we wait at the back of the line. 

 

*Okay, well, maybe not for literally every other reason.

 

[gr82be 14,423]

2 hours ago, bigbird said:

They decided they couldn't do anything for his pain due to the CRPS and basically told us we need to find some way to handle it.  Besides the Lyrica he's on most research shows there's not much available... legally 😉

Ok @aubiefifty, time for you to step up. Sharing is caring. 

[jAUSon 2,836]

Came back from internet hiatus to offer prayers for Little Bird. Be strong!

[3rdgeneration 6,469]

Bird, have you tried good quality CBD patches for him? That might help at least take the edge off. I've been struggling with some anxiety lately and have used the patches a few times. My daughter has anxiety worse than me and it really helps. I have heard that it is good for pain as well, but I can't confirm that for you personally.  I have a good, legal source for them, if you haven't tried them yet.

P.S. I am glad James is home and I will continue to pray for you all.

[homersapien 11,371]

On 6/26/2020 at 11:04 AM, bigbird said:

Now we just need Texas to be a little more open...

Road Trip.

(You want something more than weak-assed home grown.)

[bigbird 60,523]

5 minutes ago, homersapien said:

Road Trip.

(You want something more than weak-assed home grown.)

Already in the works...