Hello all. Beware – very long post ahead. J
Scott is feeling better today – he’s recovering very well from his
surgery. His incisions hurt, but that’s
to be expected and should feel better in a few days. He is starting to see a little pain relief
from the pump and is able to move his leg in the bed a little bit. They’ve had a compression stocking on his leg
to help with the swelling.
The Doctors are slowly decreasing the IV/Oral meds that he is on
and will continue to even everything out over the next few days. They are going to try to get him walking
again today – even if it’s just a few steps.
I feel such a sense of relief that he got through surgery and we see a
small amount of progress – any progress is good and we still have very high
hopes that the pump ends up bringing a lot of relief.
He is still in the hospital and may be through next week, as well. He’s still not mobile enough to come home and
they still have to get his medicines adjusted to be able to be taken at
home. It’s been hard on all of us (Poor
Neil is still there every day I’m at work and every night – he’s such a
Trooper!) but as much as we want him to come home (and that is so so so so
much!) we don’t’ want to rush things and him be uncomfortable. Additionally, they really hope he can start
chemotherapy on Monday. Because that
chemo will be hard on him (because of the side effects and because his body has
been through so much in the past 3 weeks), keeping him in the hospital through
those 5 days will allow them to constantly monitor him and help keep him
comfortable. I will keep you posted if
chemo can start on Monday or not. This
remains the biggest goal after pain relief – we need to get back to treating
the cancer systemically and address the tumors in his liver. They are going to a scan before chemo starts
so they have a baseline to measure the success of the chemo against.
He had his last radiation treatment yesterday. They did have to sedate him again, but he’s
done with those now and we’ll know more in a couple weeks about the effect that
it had on the pelvic tumor.
I wanted to share with you all more information about the pump and
how it works. Surgery ended up being a
full 6 hours on Wednesday – 3 hours for the actual surgery, 2 hours of prep and
1 hour of recovery before we could see him.
(Those were some of the longest 6 hours of my life, but Neil and I got
through it together). The surgery took
awhile because you don’t want to rush threading a catheter through one’s
spine. The pump itself was inserted into
his abdomen, about an inch underneath his skin.
It looks like a tuna can (not kidding).
We probably won’t be able to see it under his skin, but on super skinny
people, supposedly you can.
He has three incisions – one in his abdomen from the pump, one on
his side to assist them with threading the catheter, and one in his lower back
for the same reason. They are relatively
small – the abdomen is the biggest one. The
pump is the 40ml (larger) one and is filled with Dilaudid, since he seems to
respond well to that drug. It constantly
delivers medicine directly into the spine in the amount of .5mg Dilaudid per
day (to start). He gets 4 extra
infusions each day (every 6 hours) to help with breakthrough pain (I call them “freebies”). To get these extra infusions, he uses a
remote. He puts it on his skin right
over the pump in his abdomen, pushes a couple buttons and waits for the
beep. It sounds so crazy, but that’s
really how it works! If he tries to do these
before it’s time, the device will record the attempt, but not let him.
When he gets an MRI or other magnetic scans, the device is setup
to stop when the magnet is detected and will restart after it’s done. The pump batteries can last for 4 – 7
years. He will hear beeping when they
get low, or if there any problems with memory, the device being empty,
etc. When its batteries are out, a new
pump is inserted. Obviously, we hope
Scott won’t need it for anywhere near that long, but many people live with pumps
many many years.
It was pretty interesting to us that the reps from Medtronic (the
company that makes this pump) were there to assist and oversee the insertion of
the device during surgery. We met them
and they were the ones who told us how the remote and pump work.
The pump started delivering the medicine to his spine
approximately a ½ hour after they turned it on.
He will have to go back periodically to get the pump refilled. It will likely be around every couple
months. We he goes in, they access the
pump in his abdomen via a needle and drain any excess medicine. They then refill it with a needle, as well.
More about life with the pump can be found here: http://www.medtronic.com/patients/chronic-pain/device/drug-pumps/what-is-it/index.htm
He got this pump (Medtronic Synchromed II): http://www.medtronic.com/patients/chronic-pain/device/drug-pumps/our-drug-pumps-for-pain/synchromed-ii/index.htm
And the remote device (Personal Therapy Manager: http://www.medtronic.com/patients/chronic-pain/device/drug-pumps/our-drug-pumps-for-pain/personal-therapy-manager/index.htm
If you have any questions, feel free to let me know and I’ll try
to answer them.
I hope you all have a good weekend! I’ll be at the hospital all weekend again and
will send another update Monday night to let you know what happens with chemo
and how he’s feeling.
Love,
Amy
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