Jump to content

Menu

Emergency fairy dust, prayers, whatever you've got


Just Another Jen
 Share

Recommended Posts

  • Replies 259
  • Created
  • Last Reply

Top Posters In This Topic

No real update. He is finally sleeping and not hallucinating. So I have a few minutes of quiet before something beeps and and army rushes in.

Just wanted to check in and maybe mull over curriculum or bookshelves....

  Things I'm thinking include:

Being so grateful that my other kids especially my daughter totally rock. She made a menu and a schedule and has both older and younger brothers completely in line.

Maybe we'll drive Connor back to Chicago? The concern is germs. If we drove him he would be in way less contact than an airplane. What do you guys think? This would be after a diagnosis and treatment of course.

Tomorrow is gonna be a big day. 3 procedures.

Putting the central line back in (he ripped it  out while hallucinating)

Transfusion

Bone marrow biopsy

 

Then we wait again.

Link to comment
Share on other sites

No real update. He is finally sleeping and not hallucinating. So I have a few minutes of quiet before something beeps and and army rushes in.

Just wanted to check in and maybe mull over curriculum or bookshelves....

Things I'm thinking include:

Being so grateful that my other kids especially my daughter totally rock. She made a menu and a schedule and has both older and younger brothers completely in line.

Maybe we'll drive Connor back to Chicago? The concern is germs. If we drove him he would be in way less contact than an airplane. What do you guys think? This would be after a diagnosis and treatment of course.

Tomorrow is gonna be a big day. 3 procedures.

Putting the central line back in (he ripped it out while hallucinating)

Transfusion

Bone marrow biopsy

 

Then we wait again.

:grouphug: :grouphug: :grouphug:

 

I am Sending you love and strength. I am so so sorry your son is suffering. I know how hard it is to watch my child suffer and not be able to help and to wonder if things are going to get better.

 

More ((((hugs))))

Link to comment
Share on other sites

No real update. He is finally sleeping and not hallucinating. So I have a few minutes of quiet before something beeps and and army rushes in.

Just wanted to check in and maybe mull over curriculum or bookshelves....

  Things I'm thinking include:

Being so grateful that my other kids especially my daughter totally rock. She made a menu and a schedule and has both older and younger brothers completely in line.

Maybe we'll drive Connor back to Chicago? The concern is germs. If we drove him he would be in way less contact than an airplane. What do you guys think? This would be after a diagnosis and treatment of course.

Tomorrow is gonna be a big day. 3 procedures.

Putting the central line back in (he ripped it  out while hallucinating)

Transfusion

Bone marrow biopsy

 

Then we wait again.

 

Be open to the idea that the doctors may make that call if he will be heading to further treatment back home. One transport we were able to do ourselves but the other the doctor insisted on a critical care ambulance. For longer distances that would likely be a medical flight.

Link to comment
Share on other sites

No real update. He is finally sleeping and not hallucinating. So I have a few minutes of quiet before something beeps and and army rushes in.

Just wanted to check in and maybe mull over curriculum or bookshelves....

  Things I'm thinking include:

Being so grateful that my other kids especially my daughter totally rock. She made a menu and a schedule and has both older and younger brothers completely in line.

Maybe we'll drive Connor back to Chicago? The concern is germs. If we drove him he would be in way less contact than an airplane. What do you guys think? This would be after a diagnosis and treatment of course.

Tomorrow is gonna be a big day. 3 procedures.

Putting the central line back in (he ripped it  out while hallucinating)

Transfusion

Bone marrow biopsy

 

Then we wait again.

 

If you really want to bring him back soon, is it possible to get him on a private plane at reduced cost or maybe even free? I found some on Google using "free medical flight" (Air Charity, Angel Flight, …). Maybe?

 

As for driving, SLC to Chicago is a long trip, 20 hours or so, and what if he takes a turn for the worse along the way? Where would you take him? Ugh.

 

I am hoping that he sleeps well the whole night and then wakes up feeling better with no need of any of those procedures.   :grouphug:

Link to comment
Share on other sites

Thinking of you, and hoping that the procedures go well today.   :grouphug:

 

Someone mentioned Angel Flight after doing a google search for free medical flights - they are excellent.  My local support group used to work with them to help people with tick-borne diseases get to the best docs.  That might be an option for transporting him, when he's ready.  They are kind, and thoughtful. Thought it might help to know that a real person has had contact with them (well, as real as an internet contact can be).

 

 

Link to comment
Share on other sites

His fever is back up to 102. His white count is 1.6. Which is a little better. The bone marrow biopsy is on today's schedule. The insurance is acting pretty clueless. When I get a few minutes I have to work my way up the chain. Connor would like us to check him out and drive him home. 

 

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share


×
×
  • Create New...