Showing posts with label Pump. Show all posts
Showing posts with label Pump. Show all posts

Thursday, October 24, 2013

Keeping Secrets

Have you ever had to keep a secret? Have you ever had to keep a secret while making sure you don't lie? Have you ever had to keep a secret with 20-30 other people that come wandering into your life? Well, I've been practicing the art of 'secret keeping' from Vicki for some time now and I'm getting pretty good at it. You see, telling her about any big anticipated change is a BAD idea. Her anxiety overwhelms her and then we all pay for it with lots of wailing and whining.

The most current secret is her upcoming surgery - today, Thursday, at 2pm. (Whoops I just told you! That's OK, Vicki won't read this) The challenge is to not let the nurses, aides, doctors, etc alter her routine so much that she figures out something is up. We've asked all of the staff to alert those following them about our little secret and they've been very helpful so far. I've still made a bee-line for the door whenever a new professional pops in that seems like they don't know the secret so we can talk out of her hearing. As of 6am, it's still a secret to her.

Unfortunately, she didn't sleep as well, because we really did have to alter her routine. She had to be fed early in the morning because after 6am, she can't eat. So she was up a few times with nursing care. She's currently sitting up in bed yelling "I'm tired" instead of just relaxing and trying to rest.

Our anticipated stay is currently 5-7 days after surgery. It could be longer. It will not likely be shorter.

Soon and very soon, someone will have to come into the room that needs to do something that will 'spill the beans.' In the mean time, I am practicing what every NSA staff member should - keeping it under wraps, it's a secret!

Wednesday, October 23, 2013

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.