Movin

We moved rooms today to a larger room.  That's what you get when you're on the long-term plan.

I also started a CaringBridge site as people are not getting notifications from this blog.

Future posts will be at: http://www.caringbridge.org/visit/victoriaprice

Sleepless in St. Paul

It's been a long time since I saw "Sleepless in Seattle," but I do remember that the premise was much more pleasant than this "sleeplessness."

A doctor asked me how her night was.  I had a one word answer - "terrible."  She could not get comfortable.  We had a pharmacy of medications in her starting at 10 pm, but it didn't scratch the surface.  She would be in one position and then ask literally seconds later to be "turned over."  She couldn't get into her preferred sleeping position - on her stomach as that was the worst.

So I spent the night asking God for ways I could help her.  I tried a number of things, but nothing worked for very long.  This morning she received some baclofen and oxycodone and viola! that calmed her for an hour.  Unfortunately, it didn't last long, but she's been more comfortable this morning than the entire night last night.

So today will be the day to advocate for increased medication to make her more comfortable.  She has a number of days left in the process and she can't afford to be "sleepless in St. Paul" for that many days in row.

This is the closest thing I've experienced to what God went through when Christ was sacrificed on the cross.  Watching your child suffer like that causes you to ask a lot of hard questions.  I truly believe that God is in control of everything, but I don't understand why it's necessary for a lot of the suffering in this world.  Oh I know there are good theological answers for all of that, but when you live it, NONE of those words are helpful.

We continue to cry out to God for mercy and comfort and strength for our Dolly.


If you can call it a "bright spot," we moved to a much larger room.  The space is definitely nice, but more importantly, we can get afternoon sunshine - if and when it actually shines.

Good news / bad news

Last night was a tough one for Vicki.  She would wake up yelling that she needed more medicine.  I would ask the nurse to get something, reposition Vicki, reposition again and againg until she would finally take a deep breath and sigh and go to sleep.  For half and hour. Then start the process all over again.  All night long.   I felt like such a drug seeking mom.  I assume this is her response to the withdrawal.  We need to work on a better solution to her night time rest.

The good news is that her back incision looks SO much better.  There is no more puss or spinal fluid drainage.  This is not her surgeon's weekend to be on call, but she came in to see her.  I thanked her for coming in,"I like Vicki."  She was very pleased about the way her incision looks.  It appears the leak has stopped.  She said the infection actually could have stopped up the leak.

The bad news is that they need to have her pump dose down to 100 - 200 mcg/day before they can remove the pump or have very serious effects on her muscles and then kidneys.  They dial it down 10% a day.  By my calculations, that will not be until somewhere between Nov. 15  to the 20th.

The surgeon also said she has been thinking and dreaming of how she is going to plug this hole when she takes the catheter out of her spine.  It is difficult because of her spinal fusion.  She thinks she may have a solution of implanting a different kind of catheter that is impregnated with antibiotics into that spot.  That would also keep the spot open for re-implanting the pump.  That usually does not  happen for 3 months after this current one is removed.

This morning, Vicki is rather sedated.  Why can't this happen at night?  They are working on a concoction to give her at bedtime to hopefully let her rest better.  It is hard when Vicki is unable to say where her pain is or if she is just agitated.  We have many options of medications to give her (all of which we used last night at one point or another) but don't really know which one(s) will help.

As you can see, we have a long road ahead of us.  If you would like to send a card or note to Vicki, the mailing address here Gillette Hospital, Adult unit, room # 7319, 200 University Ave E, St Paul MN 55101.

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...