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.

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.

Roller Coaster Ride

NOTE: if you read this and then call, if Vicki is on the line, please don't mention the surgery. Thx.


Yesterday (Tuesday) was a bit of a roller coaster ride. Vicki's pump dosing was altered with the hope that by doing so we could put off surgery for a period of time. Unfortunately that left us with a lot of unknowns. Would it work and make her tone better? Would it worsen a suspected micro-fracture in the catheter? If it did make it worse, would it be a slow change or a "blow out" sometime in the future?

At the very same time, the surgeon was indicating via phone that she wanted Vicki to have surgery soon. At one point we thought the surgery was going to be today (Wednesday).

Those two things (changes in the pump and surgeon wanting to change the pump) left us with a decision. Do we wait out the changes and see what they do for Vicki or do we push ahead with surgery? We were graciously given a lot of input by the first doctor so we could have as much time as possible to consider the options when we met with the surgeon. After phone calls to Laura, some time on my knees (literally) and some additional time thinking, I felt like surgery was a good option.

I spent the evening waiting for the surgeon, but we never saw her so I went to bed wondering. I told God that the decision has to be in His hands, because I wasn't being given the options. I gave up worrying about it. We slept "well." (The definition of "well" in the hospital is that you get about 2 hours at a time before something wakes you up.)

This morning (Wed) we got up and had no news. However, the surgeon was there very early and she said, "She's tight. Let's do it tomorrow (Thursday)." So the whole option thing wasn't really an option. I doubt that I would have argued with her because she was very confident it needed to be done right away.

I don't have a time yet, but the surgeon was doing her prep to find a time for surgery tomorrow (Thursday).

We are in a good place and I feel like we're on the right path.

Thanks for the prayers, calls, visits and support.



For those of you who are interested in a more detailed explanation of the pump aspect - Vicki's pump is an infusion pump. It has a catheter connected to it that extends from the pump and is anchored in her spine area so the medicine can be delivered right to the spinal fluid. The pump needs replacing every 3-5 years depending on battery life. The catheter only needs replacing if there is an issue.

Vicki's muscle tone has been getting slowly worse for some time. It has been getting dramatically worse in the last 3-4 weeks. So much worse that she can't even sit in her chair for very long! Not a good thing, since she practically lives in it.

The increased tone can be due to a number of things: infections, illness, or something wrong with the pump/catheter. After investigating practically everything, the catheter is believed to have a "micro-fracture." This allows the medicine to seep into her body wherever the crack is. Not a super big deal if the crack stays small and she gets the rest of the medicine, but as you've read, that's not the case. The pump will be replaced because it will have to be replaced within a year anyway. The catheter is likely to be replaced. If it is, the recovery will be longer.

Too Much Tone!

I haven't had to use this blog for some time to talk about one of the kids and a medical issue.

Well, I wanted to communicate to our many family and friends who support and love us so here's an update on Vicki. It's not very entertaining, but it'll give you the facts.

For about 3-4 weeks now, Vicki has displayed increasing agitation, increasing difficulty sitting in her chair or being in her stander, and increasing tone. She also has been sweating profusely and not sleeping well.

We never know exactly what's going on because she tends to 'cry wolf' a lot. After dealing with it for a while, we called and got an appointment to have her Baclofen pump looked at. For those that don't know, Vicki has a pump that delivers the medicine Baclofen into her spine. The medicine helps keep her high tone under control.

When they looked at the pump, everything appeared fine so we went home. Fortunately, we were given a prescription to give the medication orally if her symptoms didn't resolve. Her symptoms didn't resolve and we started giving the medicine orally. That made her more comfortable, but didn't resolve the underlying issue.

Last Friday, I brought her to the ER at Regions Hospital with the hopes of getting her admitted to Gillette. Gillette is housed in Regions, but they specialize in special needs kids and adults. After 10 hours in the ER, they basically decided they couldn't help us and sent us on our way (even after I got them to consult with a Gillette Dr.) Arrrgh.

On Saturday, I talked directly with the Gillette doctor and he agreed that we needed to be seen right away Monday morning in the clinic. Unfortunately, the clinic never called, so I called the nurse line and got them to agree to have Vicki seen in the hospital.

Now, it's Tuesday and we've been here 24 hours. Everyone agrees that the likely cause of Vicki's problems is a microfracture in the catheter that runs from her pump to her spine. This is causing her to lose some of her medicine and ultimately puts her into 'baclofen withdrawl.'

We have a very good doctor, that we also know from 'Joni Camp' who is working with Vicki. He is adjusting the schedule of when the medicine is being delivered. He is increasing the rate at which it goes in for shorter periods of time (a bolus). He describes it as like forcing water through a hose at a high rate to overcome a small crack. He's been successful in delaying the surgery for other patients. If that doesn't work, Vicki will have surgery soon. If it does work, she will still have surgery, but it can be postponed and scheduled rather than being "urgent."

That's it for now. Thanks for the prayers.

Scott