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Part Two of Mathew's First Discharge from Moffitt


This post will consist of text messages, an article quoting Dr. Reed, the Sarcoma Doctor, and an explanation of how the pain pump works for dosing and translating all of that information into meds for going home and why it takes a day or so for the transition.

Texts Between me and Diane

Not home today. Still 
transitioning to oral 
pain management.
Sent March 17


Stent won’t be internalized for a few months 
after tumor shrinks and takes pressure off of
bile duct and liver.
VAC is 12 hours.
For going home you need to go
downstairs and verify insurance and
take Mathew’s I.D. I will cash check 
today and give you cash and when
you are here we can go to the pharmacy
together and figure it out.
Sent March 17

I’ll plan on being there about 8:15
tomorrow to get insurance info taken
care of. Been on phone with them for
past hour getting other claims straightened
out…..again.
Have they installed the pleural drain (pigtail)
yet?
Rec’d March 17

Going now
Sent March 17

Ok. Good.
Rec’d March 17


He is waiting to go in. Should be
done by 5.
Sent March 17


They just took him back. Carlos is
here with me. We will get him
something good to eat afterward.
Sent March 17

He’s all done and did well. Should be
going back to room soon. Let 
Arpie know.
Sent March 17


When I saw the lung drain they had hooked up to Mathew my heart sank. Just as he was about to go home and he has a thick laptop-sized box attached to him by tubes. How in the world would he be mobile with that thing and how would it work out at home. Then Dr. Creelan came in and he was not pleased. “That’s not what I ordered,” he said.



Not going home today. If you want
to do paperwork tomorrow.
Sent March 18


Ok. But will go ahead and get
it done today.
Rec’d March 18

Done! Quick and easy…. surprise!
I’ll meet you in the main lobby, 1st floor.
Rec’d March 18

Coming

Today they are changing out that
larger lung cath for a small tube
under a bandage.
Sent March 18

It was going to be tomorrow but
bumped to today.
Sent March 18

Hope that helps with pain. On my way
to work now but if I can help later today
with any of my Moffitt contacts to get
things straightened out, let me know and
I’ll do what I can. Have you seen Dr. Reed
yesterday or today?
Rec’d March 18

No Dr. Reed yet. I’ll ask
here in a bit. Carlos will be
here this afternoon with me.
Sent March 18


I remember the first time Dr. Reed came to Mathew’s room. It was a short visit, he was very pleasant but I wonder now, how he felt coming to see Mathew for the first time. I wonder what he thought when he knew he had a patient with Desmoplastic Small Round Cell Sarcoma.

I found an article about rare cancers in which Dr. Reed is quoted. His quote about DSRCT is telling. Take a moment and read the article 
Interestingly enough, this article was posted at the same time Dr. Reed was treating Mathew.



He needs to be made aware that team has
made numerous and repeated errors 
including nurses error on Friday telling Mat
he could eat which kept him from getting
drain…which now has caused problems w/                                 
     backing down pain  meds…
Grrrr
Rec’d March 18

Mat is going to need something to eat after 
he gets back to the room. He wants a
sandwich from Public. He’s sending order.
Sent March 18

K
Rec’d March 18

They just took him back. I hope he
doesn’t have anywhere near the same 
amount of pain as last night.
Sent March 18


Early on, in the first week at Moffit I asked the pain and palliative team how the pain pump worked, with the bolus dose and how did they determined what adjustments need to be made by based on Mathew’s use of the button. They would come in and unlock the pump, push some buttons, make some notes and adjust the meds. Then when it was time for Mat to go home, those same doses needed to be translated to pills.

So this is how the palliative care doctor explained all of this to me.

The PCA (patient controlled analgesia) pump is adjusted based on the patient's comfort level and the amount of drug (morphine, Dilaudid, or fentanyl) which was required to achieve that comfort.  For example, if a patient was receiving 1mg an hour but his pain was still 10, we would normally double to 2mg an hour; and/or if it was at 1mg an hour and he had used 24 extra doses to maintain comfort, we would divide the 24 by 24 hours and change the dose to 2mg an hour. 

Changing between IV and oral is a mathematical calculation. If a patient required 1mg of Dilaudid an hour IV, or  24mg IV daily, that would be the same as about 120mg of oral Dilaudid or 480mg of oral morphine, because IV opiates are quite a bit more effective than oral ones.

















































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