A Success

Vicki was amazingly calm during the time they came to get her, while she was in Pre-Op and up to that last moment of consciousness. The "secret" was finally revealed to her about 40 minutes before surgery. That in and of itself is a miracle and a success! Vicki usually sniffs out these things, but was none the wiser even with the man trying to place an IV said, "So you're headed to surgery..." when he couldn't get an IV started in her room! I quickly replied, "Not soon! You must be thinking of a different patient." Then he remembered his blunder and said "Oh, my mistake, I must be confused."

She was asking questions and simply lying on the gurney throughout the Pre-Op time even after the big "surgery" word was revealed. I think part of her was relieved to know she was going to get some help.

I was able to accompany Vicki back to the OR and watch her "drift off" to sleep under the anesthesia. Drift is not a good word for this kind of sleep. It is more 'forced on you' through the medications. Although she usually fights it, she did so much better this time. Partly because they gave her medicine in the IV and partly because of your prayers. She was able to hear her favorite verse as I whispered "God has said, 'Never will I leave you, Never will I forsake you.'"

When I got back to the Pre-Op room to get Laura and Hajik, he was visibly nervous. He worries when his girl isn't in sight. I had to tell him several times that she would be OK before it sunk in.


One of the things about having a child in the hospital that's difficult is the rest of life keeps on going. Work, kids practices, school and activities all continue as if oblivious to what's happening to the one child. After giving Laura a tour of all the places you can go in the hospital, I had to leave to meet two clients for evening meetings. Along the way, I called the PCA's at home to make sure the others were still OK. I met my clients, and then headed up to my brother-in-laws to exchange my van for his truck so I can head up to my parents this weekend to help them move. Yep, life keeps going.

Laura reported that the surgery went well and that Vicki has a new pump and catheter. Both are the latest and greatest so she should have fewer problems in the future. The surgeon remarked that it was a bit of work to get the catheter placed due to Vicki's spinal fusion and all of the extra bone in the way.

Vicki will now be flat for 3 days and then in the hospital for 2-4 more days after that - minimum.

We are truly grateful to be circled by your love, prayers, kind words, visits, food etc. God IS Good.

Scott

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!

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

What a Weekend of Baseball!

Would you like to hear about my 'stressful' weekend? Of course you would, that's why you're reading this!

I put the word stressful in parenthesis on purpose. It was an intense weekend, but by comparison to serious issues facing so many people, this was nothing. Let me explain.

I was privileged to be an assistant coach of the Grasshoppers AA baseball team this summer. By doing this, I joined a coach we had last year (Jesse) who was amazing and I was able to coach my two youngest boys at the same time!

When Jesse and I left the draft, we felt pretty good about our team because we knew about 1/2 of our team from past experiences (and the fact that 3 of them were our boys). Of the remaining players, we had a vague idea of 1/2 of them from other coaches in the draft room based on their ratings. The last few players we didn't know at all.

When we got to our first full outdoor practice, we realized we were already in "mid-season form" compared to last year's team. We had a great group of kids who were willing to work a little and did well at listening (as well as 8-10 year old boys will listen).

When we finished our first game, it was hard not to wonder about how well this group would do. After all, we are in AA ball - an instructional league where we wanted ALL of the players to learn and improve. Nevertheless, I kept my 'wonderings' to myself.

As the season progressed we built a momentum that was hard to stop. We were midway through the season and still undefeated! We were all excited and the kids were slowly increasing the size of their melons. Not too bad, but enough pride that we had to do some talking from time to time about sportsmanship and being humble in victory.

Now please understand, that winning is not everything. Everyone on the planet loves a winner. And life is just a bit more fun when you are winning. But we really didn't want to emphasize an undefeated season. Our record and our great group of kids gave Jesse the opportunity to try some new things. He was able to allow ALL of the kids on our team a chance to play positions that they would not likely experience given different circumstances. The beauty of this is that ALL of the kids responded to new challenges. Maybe they had never pitched before or maybe they had never strapped on the catcher's gear. With a new challenge before them, they beamed and did quite well. After all, everyone needs a first time experience in order to learn how to do anything, and Jesse gave that to them.

The side result of experimenting is that we lost a game! My exclamation point means that this was a good thing! The kids were brought back to reality that they are human and that life brings losses. It was the perfect teaching moment to give them an understanding of what all of the other teams felt like when we had beaten them.

At that time of the regular season, I had no idea how 'important' that loss would be. It turned out in the end of the season tournament, we played that very team. Before the game, the other kids were pretty confident that they would beat us. Our kids played some good 'Grasshopper Baseball' and beat this team to put them in the losers bracket. But the story doesn't end there.

We met the same team 3 days after beating them in what could have been the championship. Since we were in the winners bracket, we only had to beat them once and we were the champs! It was an amazing game, played well by both teams, but we were not to be victorious that day as we lost 4-3 in the bottom of the last inning!

Once again, we had a chance to help the kids work through loss and disappointment. Yes, I was disappointed too. We were so close and yet couldn't get it done. The very next day, we played them again for a "winner take all" championship. Once again it was an exciting game (if you are a fan). If you are a coach or a player on either team, let's just say nerves were tight - exciting, scary, etc. But here's where one of the many good parts comes in...

...We had been teaching all year - be a good sport - play hard - be humble in victory and gracious in defeat. One of our kids who was still trying to grasp that lesson said to the entire team during the intense parts of the game "guys, we've had a great season, no matter what happens, we should be proud of what we've done." WOW, talk about a victory! This young man was vocalizing on his own what we really wanted to teach the kids. Did we want to win, yes! I mentioned before that it's fun to win, but if we didn't win, could we hold our heads high, be gracious and still have gotten positives out of the experience, a bigger YES!

I suppose you want to know what happened in the game. Well just a minute, because there's one more lesson. In the very last inning of the game with the championship on the line, the two kids that had to sit on the bench that inning approached me and asked 'Coach, will you sign this?' They were more focused on having their coaches and teammates sign a ball than really caring whether they won or lost. To myself I said, "Can't you see how close we are to the championship?" But I responded, "sure" and signed it while thinking, "They really have a better perspective on this than I do." I was proud of them.

And getting back to the game, we did manage to be victorious 5-3 in a full 6 inning game. We were able to celebrate being the champs! The other team was a great team and their kids played really well! Their coaches coached hard, and they were all gracious in defeat. It's one of those games where you really don't want anyone to lose.

Jesse gave me a gift that will be a prized possession for the rest of my life. He had all of the kids sign a ball and then placed it in a case. It sits on my desk where I will be reminded of the fun season we had, the amazing group of kids, yes the championship, but most importantly, the lessons I learned from the kids!

Where's the Fire (truck horns)?

Summer brings a lot of fun things - fishing, barbeques, swimming, fireworks, and parades. We had the chance to get to two parades this summer. I couldn't help but notice the contrast.

At the first parade, there was a lot of noise with the fire trucks blasting away, the bands playing loud songs and the various "floats" playing their music. The first parade came with boat loads of candy - tossed gently by the parade walkers. And finally some good old fashioned water spraying. A couple of the floats had the "heavy artillery" guns and shot at those who wanted to get wet. We had a great time!

The second parade was much, much more subdued. The fire trucks were silent! Silent! Have you EVER been to a parade where the firetrucks were silent? I hadn't until this last weekend. There were NO bands. Not a single one. There were some "floats" that had music, but they were pretty tame. And not a drop of water was sprayed.

Before the second parade, my son said, "but parades are boring!" That's not what he said after the first parade. Perhaps he was being prophetic, because the second parade was boring!

I can't help but think that we have become so OVER sensitive that we can't do anything fun because someone might be uncomfortable. Look, I have kids with disabilities and some things need accommodations, but quite frankly if the noise is too much, we either leave or don't go at all. I don't ask the rest of the world to quiet down just because one of my kids doesn't like noise. And water, oh my goodness! Are we all 'wicked witches' who will melt if we get wet? Seriously! If you don't want to get wet, MOVE!

If someone complains about the noise of the fire trucks, tell them to bring ear plugs. If someone complains about getting wet, tell them to bring an umbrella and let the rest of us celebrate!

Happy "License Day"!

On this 4th of July, I'm struck by where our nation is headed. We no longer value freedom, but instead put license up on a pedestal. As a starter, let's look at the definition of the two words.

Freedom: 1: the quality or state of being free: as
a : the absence of necessity, coercion, or constraint in choice or action

Examples of FREEDOM

He thinks children these days have too much freedom.
She has the freedom to do as she likes.

License: a. Lack of due restraint; excessive freedom: "When liberty becomes license, dictatorship is near" (Will Durant).
b. Heedlessness for the precepts of proper behavior; licentiousness (and licentiousness means: lacking legal or moral restraints; especially : disregarding sexual restraints)


At first glance, the words Freedom and License may appear to be interchangeable. But if you look closer, you will see a dramatic difference.

The definition of Freedom talks about the absence of constraint. So that means I can do whatever I want right? No. The dictionary goes on to say "Freedom emphasizes the opportunity given for the exercise of one's rights, powers, desires, or the like." This means that you have the opportunity to exercise your rights etc, but there's also an implied amount of restraint. License on the other hand is defined as excessive freedom.

Here's a practical example. We have speed limits in our country. And while few of us adhere to the 'letter of the law' and stick to the actual number posted, most use "freedom" to stay near the limit. A minority of people will use 'license' to drive at whatever speed they feel like. Freedom uses some restraint, license does not.

What I'm observing in our country is more disturbing than violating a speed limit. It's taking license with moral issues. I'll highlight two examples - abortion and 'gay marriage.'

In 1973 it became "legal" in the United States to kill an unborn child. The arguments for both sides have been debated ad nauseum so I won't delve into them here. Instead, let me point out that the 10 commandments are very clear - Thou Shalt Not Kill. We've taken license with abortion and justified it with arguments that make us feel better and now it's legal to kill an unborn baby. While it may be "legal" in the United States, that does not (and never will) change the fact that it is immoral.

In the last year, we have been overwhelmed with a push to 'legalize' 'gay marriage.' In fact, Minnesota has now 'legalized' such actions. The Supreme Court has overturned a law against 'gay marriage.' The fact that a state has made it 'legal' or that the Supreme Court does not agree with California's law, once again does not change the fact that it is immoral. If you read the Bible, it's once again clear in Romans 1:26 and 27 that God is not pleased with what we call 'gay marriage' but instead 'gave them over to shameful lusts.'

If you cannot bring yourself to read the Bible and accept the truth of it, that does not change the argument I am making here. Freedom comes with some restraint. License does not. We now have the 'license' to kill a child in the womb. As a nation, we are gaining the 'license' to practice more and more types of immorality because we have 'legalized' it.

I'm confident that many people feel better in their justification of committing immoral acts because they are legal. You may feel fine for a time, but if you search deeper into your soul, you will find that just because something is 'legal' doesn't make it 'moral.'

As you celebrate today, and call it "Independence Day" remember that being completely independent from God and his righteous limitations is not Freedom, but License. So call it what it is and enjoy your License.