New to group

[Guest guest]

Ok...my son's situation is not similar to most of you in the aspect of when his

surgery was done. His surgery was done 5 years ago. He has cerebral

palsy...developed sudden onset scoliosis when puberty hit. Two years after the

surgery he developed an infection due to the vertebrae rotating and then a bar

between the rods poking the skin from inside. Bacteria got in and infection.

They went in, removed the cross bar but realized they couldn't remove the rest

of the hardware. They cleaned everything out, checked it again and closed it

up. Initially was on IV antibiotics. Once the two bacteria were identified he

was on dual antibiotics for 6 months and then a single daily antibiotic for a

year. The bacteria managed to some how get past and eventually created a new

sinus/fistula lower down in the lumbar area. The first one was in the thoracic

area. It's come to the surface and dumped it's gunk and then receeds and the

skin closes up...it's done that twice now. Any surgery is no longer an option.

He has severe restrictive lung disease, primarily using the left lung, has

problems with 02 sats and on occasion needs oxygen.

My question is this. Has anyone on the group ever had an infection related to

their hardware and if so how far did it end up going...just the tissue or did it

get into bone...this one is in the area where the screws are...three on each

side. The rods are covered in the bacteria so there is a good chance they are

on the screws too...so it's possible that it's going into the bone. What did it

feel like? How painful was it? Our son cannot communicate other than showing

obvious pain which we are seeing lately when we move him or manipulate him.

Today he was in constant pain while I turned him and set him up...once I stopped

and left him alone he was fine. I guess I just want to know what he is feeling

or going through...what it feels like so I can know how uncomfortable or painful

it is for him. We are working on pain mgmt....but he also has a really high

pain threshold so when he indicates pain then he's in pain.

Sorry for the length of this...just been a frustrating day of realizing that

he's going downhill and all I want is to make sure he doesn't suffer...He sleeps

a lot and I can handle that much better than him being in pain. We are

currently trying tylenol with codene because regular motrin or tylenol isn't

cutting it. The hospice nurse said if the T-3 doesn't work we can try something

else...

Thank you