I have a line to PICC with you

Getting the PICC (Peripherally Inserted Central Catheter) line started was a bit of an ordeal.  The nurse who placed it travels around to different hospitals starting these central lines, so we had to wait for her to get here.  We pre-medicated Vicki with some Valium but she was still quite agitated when they were trying to place it.  The nurse said she had great veins and could get the line in, but with Vicki's high muscle tone she could shut the vein right down so she could not thread the IV up her arm.  I could not distract her enough to settle down.  We decided to stop and pull out "the big guns".  We gave her a little more Valium AND called Dad and the brothers.  She was very calm while she listened to her brothers tell stories of what they had done that day.  Then they had to take an x-ray to see if the tip of the line was in the right place.  It had curled back on itself, so the nurse pulled it back a bit.  Another x-ray.  Still curled.  Pulled back some more.  One more x-ray, still curled so she pulled it back further, now making it a mid-line IV, but fine for the medications they wanted to give her.  They started her on wide spectrum antibiotics until we got more specifics on what bacteria grew from the spinal fluid culture.  They found out the general type of organism and changed the antibiotics today while still waiting for the exact organism and it's sensitivities to antibiotics.

Vicki's sleep has been fitful.  She awakens crying loudly.  It is hard to know if she is in pain or just agitated from the start of the withdrawal.  So far we have turned the pump down twice, 10% each time.  We are trying to keep her on a consistent dose of Tylenol and Ibuprofen with occasional Valium for now.  We will add more muscle relaxants as we keep cutting back the Baclofen.

Vicki's back incision keeps leaking fluid.  It makes me wonder if she will keep leaking fluid after the pump is removed.  That could keep her in the hospital longer.

Tomorrow, Sunday, we will switch places again.  Scott will return to the hospital after having had a couple of days at home and a chance to watch Tim and Andrew in their first hockey scrimmage of the year.  I will host a family birthday party for Tim and Matt.  I have asked for help to make it happen because I don't know when a better time will be.

Things are not looking up

We started the day with a couple of blood tests to see if we needed to be concerned about things.  Her white blood cells are elevated and a test to check for inflammatory markers in the blood is also elevated.  Next they drew cerebral spinal fluid through the pump, took blood and urine cultures.  The infectious disease doctor came up to say that the spinal fluid is cloudy and full of white blood cells.  He explained to me that they can not do anything to treat that plastic catheter in her spine to rid it of bacteria.  It has to go.  So, we will be spending the next week turning the Baclofen dose down on her pump in order to prepare for surgery to remove the pump.  They will be putting her into withdrawal.  They will give her oral Baclofen and Valium to help to lessen the effects, but I don't think this is going to be fun.  She will be getting a central IV this afternoon in order to start IV antibiotics. 

I don't know how long she will have to stay after surgery, but it will be at least 10 days from now.  Please keep us in your prayers.  Vicki was in the room for this whole discussion.  So far she is relaxed, but she is on Valium.  I haven't seen any for the parents...

Flat Again

Mom's turn to be with Vicki.  Scott and I needed a break from the roles we have had the last few days and it doesn't look like we will be all in one place for a while yet.

The surgeon came in tonight and put Vicki back to flat for the next 24 hours.  It is better than standing on your head, but not going home like we thought would have happened by now.  There is no new drainage from her back incision.  That is good.  There is a little puss at each stitch mark that seems to be a reaction between the stitch and the "glue" they added yesterday.  The surgeon didn't seem to be concerned.

Vicki is not happy to be here.  It's a nice place to visit and even be here for a while but it is getting old, as it is for all of us.  Appreciate your ongoing prayers.

Happy Halloween!

The hospital staff does a good job of making things fun when a holiday rolls around.  They had "trick or treat" stations throughout the hospital. Vicki was left in charge of the 7 West candy.

Happy Halloween!

Up and Down and Upside Down

Today has been a day of up and down - literally.  We started the day with the goal of being up in the bed and then up in the chair.  After being up in the bed at 30 degrees, there was some drainage around the back incision.  So Vicki ended up like this:

You can see a smile on her face, but trust me, she's not always this happy about it.

In addition to being flat, Vicki has seen PT, a therapy dog, an infectious disease doctor, ATD (the chair people), Music Therapy and Rec Therapy.

PT said, that her hips may be "locked" at 65 degrees due to bone changes and not muscle issues.  She suggested we see the orthopedic doctor to get more information.

The therapy dog was a poodle and had been introduced to Hajik before.  They said "hi" again, then the poodle talked with Vicki for 3 minutes and left.

Infectious disease said that "one line" of a culture had grown something in her Cerebral Spinal Fluid (CSF) when it was last taken.  One belief is that it was a contaminate in the lab.  There are no other signs of infection so it is the leading theory.  We need to have another check of the CSF in the near future.

ATD came up and adjusted the back of Vicki's chair by 10 degrees.  It's more open now.  Think reclining slightly.

Music Therapy kept Vicki entertained long enough for me to talk with another professional.

Rec Therapy brought some costume options for Vicki for tomorrow.  Guess what she chose to be? a) A princess?  b) A fairy? c) A witch? or d) A doctor?  Final answer?  d) a doctor.

I'm certain she will try to tell everyone what to do tomorrow when she becomes a doctor.  She already does that, but doesn't wear the lab coat.

The day has been full, but as I said, has been up and down.  We can not go home until she stops leaking.  So I told her to "dry up."

Right now, we are waiting for the surgeon to come in and give us an opinion about the leakage.

Epilogue:  We saw the surgeon. She determined that the fluid was indeed CSF and leaking.  That's not a good thing.  She said at one point, "Let me think about this."  She was considering surgery, or novocaine  and some additional stitches.  When she left the room to think, I was wondering to myself, "Do they ever use glue in a situation like this?"  She came back in and said, I'm going to use "Dermabond" - a glue.  That felt like a good confirmation to me.

The "Upsidedown" side to all of this is as follows:

She has to be in "reverse trendelenburg" position until at least tomorrow.  We could be looking at 3 more days of being flat.  She also has to hold off on a feeding for now so we don't add pressure.  She will be getting a medicine to slow the reproduction of spinal fluid.  The idea is that by "turning off the faucet" of the spinal fluid, there will be less pressure and hopefully not make it worse.  The surgeon's last words to us were, "It's not a big deal now. Let's keep it from becoming one."

Movin on Down :(

In every hospital stay there is the 'setback' or 'hold up' or some other words that describe forward progress stopping and backward progress starting.  Today was that day.

It started well enough with one hour in her chair in the morning!  But the afternoon stint was only 45 minutes.  After that there was some very slight drainage from her back incision.  It doesn't seem like a big deal when it is less than a dimes worth, but when you consider it might be spinal fluid, then it could be a big deal.

She went from having the chance to be in her chair and to eat some things by mouth to being flat for the afternoon/evening and nothing by mouth.

It's disheartening, but it's not life-threatening.  So we wait and try again tomorrow.

Movin On Up!

Vicki has been cleared for take off!  No, she can't go home just yet, but she can have the head of her bed raised!  She started with 10 degrees and will move to 20 by this afternoon.  See how she is:

It's not a big change, but it keeps her happy and it's foreword, or should I say upward progress.