Guess who's back...back again...

[Eagle Eye 7 2,535]

🙏 praying for the best for all of you. 

[bigbird 60,499]

Been a frustrating day. Surgery, ID, And hematology fought back and forth in which way to proceed. The plan changed 5 different times today. They did all agree it was left over infection from last month, which made us feel better knowing it wasn't our carelessness that caused it.

So, as of now, they will pull the port and line tomorrow...then at least 7 days IV antibiotics at the hospital...then, possibly a PICC for about a month for continued IV antibiotics at home. Echo is scheduled for tomorrow and trying to get the ultrasound done tonight. 

There is a chance that because of his size (5'11 150lbs), he might be able to get an emergency admittance to a drug trial going on through his hematologist office. That's another, "possibility". The trial drug is a once a month treatment, so that'd be amazing if it worked.

At the end of today, we're not entirely sure what tomorrow will bring.

[3rdgeneration 6,469]

God knows what your tomorrow brings and He wants the best for James. He loves him more than you do, although I am sure that is hard to fathom, given all that James has endured. I'll pray that James will be able to kick the infection with the 7 day IV antibiotics and that he can be admitted to the trial program. Hang in there, bird. Who's got hospital duty? Will they let you switch out?

[bigbird 60,499]

1 hour ago, 3rdgeneration said:

Who's got hospital duty? Will they let you switch out?

It's a one visitor policy. So my wife was down there this weekend, my father will be staying the week, and I'll take over next weekend.

[gr82be 14,423]

10 hours ago, bigbird said:

my father will be staying the week, and I'll take over next weekend.

So glad to hear that you have family to help you through this. I know you're all exhausted so rest when you can. Praising God for all of the positives and potential from your update. Prayers continue. Also, how is Wyatt  doing? 

[aubcali 433]

So sorry, Bird. Continued prayers for your family. 

[bigbird 60,499]

Echo on his heart came back negative. Port removal was successful. 

[bigbird 60,499]

[I_M4_AU 7,801]

Looks like a tough kid developing a h3ll of a character.  Still praying.

[bigbird 60,499]

35 minutes ago, I_M4_AU said:

Looks like a tough kid developing a h3ll of a character.  Still praying.

Toughest I've been around

[Tigerbelle 5,299]

He is so cute bird! What a strong boy! I pray for James and your family every night....and for his medical team also.  Thanks for the updates. 

[3rdgeneration 6,469]

2 hours ago, Tigerbelle said:

He is so cute bird! What a strong boy! I pray for James and your family every night....and for his medical team also.  Thanks for the updates. 

Agreed! Handsome young man!

[ToraGirl 5,498]

On 8/31/2020 at 3:32 PM, bigbird said:

He is PRECIOUS!!! I love that smile! What a victor!

[auburn4ever 1,266]

Sending prayers to James. Remember that he is in the Lord's hands and  is watching over James every second of the day. GOD bless you.

[wde21 344]

On 8/31/2020 at 4:32 PM, bigbird said:

What a handsome young man! So glad you posted to put a face to our prayers! Continuing to pray for James, family and wisdom for the doctors🙏

[WarTim 3,456]

Prayers continue Bird. 

[Swamp Eagle 5,134]

On 8/28/2020 at 3:57 PM, bigbird said:

If y'all don't mind, James is back in the ER and we could use your prayers again. Last night he presented with a low-grade fever and his line from his port was a little red. This morning, more red and swollen along with pain. We took him in and they're doing an ultrasound now. Temp is up to 103.9 and climbing, pulse is around 150. The pain, redness, and swelling has all increased throughout the day. They've done a blood draw and started him on Vancomycin and Rocephin. The ER Doc thinks that the initial infection from a month or so ago wasn't entirely knocked out or there was a pocket of infection that didn't get cleared. Either way, we're there a minimum of 3 days for the cultures. Thank y'all again for being here and taking time for my family.

Prayers for your son and you all, 'Bird...

[Tigerbelle 5,299]

I hope James is feeling better today. I'm still praying for him. 

[bigbird 60,499]

47 minutes ago, Tigerbelle said:

I hope James is feeling better today. I'm still praying for him. 

He's beyond frustrated...as are his parents. As of yesterday, they were thinking PICC line and discharge Saturday with 4-6 weeks of at home antibiotics. Today they were concerned that he would be at home by himself during the day and wanted to instead send him to a rehab hospital for that duration. Ummm, NO! I set that straight with some quickness. Now, surgery is concerned about a PICC and using up a potential vein for his future port. If they do one, they're gonna have to go into his right arm because the left veins are too used. No one is sure what to do and none of the 4 teams can get on the same page. Hell, some seem to be reading a different book. It's getting to the point where I'm not wanting to be as cordial as I usually am. They just need to send us the antibiotics and let me take care of it.  It's not like I haven't been for 14 years. 

[3rdgeneration 6,469]

Is this guy one of his doctors????

We are still praying for James!

[Tigerbelle 5,299]

I'm so sorry about the frustration you all are feeling bird.  I would never want my child in a rehab unless there were no other options for care. A lot of our older Patients spend time in rehab for various reasons like cardiac care or a stroke, and they all hate being there. I hope the Doctors can figure out a plan of care that's reasonable. I'll be praying for a solution. 

[gr82be 14,423]

On 9/3/2020 at 6:31 PM, 3rdgeneration said:

Is this guy one of his doctors????

We are still praying for James!

Sounds like a lot of this too.

 

[gr82be 14,423]

On 9/3/2020 at 3:43 PM, bigbird said:

He's beyond frustrated...as are his parents. As of yesterday, they were thinking PICC line and discharge Saturday with 4-6 weeks of at home antibiotics. Today they were concerned that he would be at home by himself during the day and wanted to instead send him to a rehab hospital for that duration. Ummm, NO! I set that straight with some quickness. Now, surgery is concerned about a PICC and using up a potential vein for his future port. If they do one, they're gonna have to go into his right arm because the left veins are too used. No one is sure what to do and none of the 4 teams can get on the same page. Hell, some seem to be reading a different book. It's getting to the point where I'm not wanting to be as cordial as I usually am. They just need to send us the antibiotics and let me take care of it.  It's not like I haven't been for 14 years. 

We will keep praying for James. 🙏

[WVR 818]

That is one tough young man you have there, Bird. Continuing to pray for James and his Mom and Dad.🙏

[ToraGirl 5,498]

Praying for a breakthrough of clarity and in-sync'edness among the medical personnel to replace the spirit of confusion and chaos.  As well, for more information about the trial program and any other possibility there.  You are right...you have the history.  Your wisdom and experience need to be taken into account.  Hang in there.  Tiny nip in the air today, even in hot central Alabama.  For James.  It may not make him laugh, but one never knows.  Whenever bumbling (original even more so) and perseverance come up, I always pull these out.