A good plan and a bad IV

Well another IV bites the dust.  When they put the new one in we will be on number 6 in 8 days.  Apparently the antibiotics make them go bad quickly.  They will be placing a PICC line (more permanent IV stitched in place) while she is in the OR (Operating Room).  She will need the PICC line to come home on IV antibiotics.

They are hoping to take her into the OR within an hour.  I HIGHLY doubt it.

Neurosurgery will go first.  They will make an incision over her existing baclofen pump (on her abdomen).  They will pull out the pump and pull as much tubing as they can out that incision.  Then they will cut off the tubing.

Neurosurgery will then be done.  They will flip her over onto her stomach.  Orthopedic Surgery will make an incision down low on her back where the tubing is.  They will remove the tubing and clean out the infection.  They will then look for the other fluid pocket.  They may leave a wound suction device in the wound (which leaves the wound open).

The rehab team (that is in charge of baclofen pumps) wants her in ICU tonight, but her primary team wants to see if she can come back to her normal room in NTU.  I think ICu sounds like a good idea.  She is going to have a lot going on.

I also talked to the rehab team about getting her in for Phenol injections.  It is too soon for Botox, but she hasn't had phenol for over a year.  Phenol helps her muscles relax.  They said they would set it up.

Rehab has ordered oral baclofen every 6 hours after surgery.  I hope we can change it before we go home.  I am only good at doing meds twice a day...anything more than that is a PAIN!!!

Rehab asked what dose of oral baclofen she was on before she got her pump.  I almost laughed out loud.  She had her first pump when she was 3 years old and had a revision 2 years ago (to replace the battery). Oral baclofen was 8 years and way too many meds ago to remember.

I asked how long the pump needed to be out before replacing it.  They said the soonest they have ever done is 3 months, but 6 months is recommended.  Blah...that means 6 months of antibiotics (I'm guessing) and 6 months of oral baclofen.

Who knows, maybe we'll get rid of the pump and decide we don't want to replace it.

They turned down the pump a second time this morning to help with the withdrawals.  If we had more time we could wean her off slowly.  But that is not an option.

We have given her a second dose of oral baclofen.  She was really agitated and shaky.

She had a bath (her last for a while I'm sure).

Before surgery they will give her a bolus (all at once dose) of baclofen through her pump into her CSF fluid.

As the IV team came in to replace her IV we discovered another problem she is going to have.  I was committing to have her wear her arm braces for about 20 out of 24  hours per day (like serial casting that she has done before) for a while to stretch out her muscles since we are so worried about contractures (tight muscles you can't stretch out).  But the PICC line will not allow her to put the arm brace on whichever arm gets the PICC.

One of the reasons we were able to convince orthopedic surgery to come in (they were reluctant) is that the pus they pulled out yesterday is gram positive bacteria.  We do not know exactly which bug.  However, Ecoli is a gram positive bacteria and that is what her spine infection was last year.  I also told them that I didn't want to clean out the one area and do six months of antibiotics and then have the other infection flare up and have to do another six months of antibiotics.  I know it makes it a bigger surgery now, but let's get it over with and get her healthy once and for all.

So I think everyone is thinking the two infections are related.  We will see what grows when the culture grows out and what antibiotics it is susceptible to.

I have this tiny little hope that getting rid of the infection will allow her to urinate on her own again.  That would be almost worth all of this!

And one other thing that I am hoping for is...since her back surgery she cannot sit in her wheelchair for as long of periods of time without discomfort.  I have spoken with Orthopedic surgery about this twice and they have done x-rays both times and have not seen anything.  So maybe it's related to the infection.  Maybe not.