Another (very sad) Goodbye

Kris' friend Matt passed away last Friday.  Kris worked with him the past couple of years - they had so much fun together.  Matt was a talker so they got along well ;)  They were both VERY particular about their trucks! This weekend is the annual logging show nearby.  Last year Matt and Kris brought their work trucks to the truck show at the logging grounds.  They camped there and bragged about their pretty trucks. Kris promised Matt he would still bring the trucks this year; he spent many hours this past week getting the trucks ready to go.

Matt's passing has been hard on Les... and Kris.  A reality check, ya know?  Please keep them and Matt's family in your prayers.  You will be missed, Matt.  We rejoice that you knew Jesus and that we will see you again some day.

Les is doing pretty well.  He got his stitches out today and everything looks really good.  He is supplementing about 900 calories per day through the feeding tube.  He was weighed at the doctors office and he has gained a few pounds!!!   He didn't feel very well through Tuesday, and Tuesday was his last ride up to Canada to join the fishing crew.  Of course on Wednesday he felt much better and wished he was fishing.  He was kinda down in the dumps for a few days.  He's been playing with the Dynavox machine, but gets a little frustrated with trying to figure it all out.  The sales rep comes Monday; that will be a good thing!  We had little man extra this week so he kept us busy AND entertained.   We are having a quiet weekend, which is nice for a change!  I am cleaning out my office closet - we need some storage for all this new medical equipment showing up.

Feeding tube -- Success!

Finally Les is in his room and settling in on 4S.  A very long day! The doctor told me all went well; Les was a trooper.  It wasn't easy finding a "window" for the tube but they did it!!  Les was awake through the procedure and could watch a huge X-ray screen which showed the barium moving through.  The tube through his nose and then his throat was quite painful, and they inflated his stomach which Les said was very uncomfortable.  He still cannot eat - not until tomorrow morning.  They want the tube to heal a bit before using it.
He says right now that the incision is getting very painful.  Hopefully we will be out of here by noon tomorrow.

We are very sad that Kris' friend Matt passed away this morning.  His first stomach ache was mid-January.  Thankfully we know he is with Jesus, and he is no longer in pain.  Please remember this family in your prayers.

Feeding tube

Well here we sit waiting for Les to go in.  Almost noon, we've been here since 8:30.  A couple little glitches.....but a really nice nurse here with us.  Les hasn't eaten since 4:30 last night-he is hungry!!  He had to drink barium twice last night.  When the doctor was telling us the risks, Les put his fingers in his ears.  We don't want to hear what could go wrong - we just want this done today!!

So, now it's 3 and I'm sure some of you are anxiously waiting!  The patient before us had complications so we sat in the pre-op for 4 hours.  They finally took Les at 2, I went to get something to eat and sat outside - fresh air!! Les' nurse texted me to call or come back to talk to the surgeon.  NOW WHAT??  Turns out the barium went through Les (very unusual).  Normally they send the patient back home with more barium and send them home......but they are instead giving him a barium enema and will still attempt the surgery.  We both agreed to this and so off they went again.  Please pray for success today!!

Surgery Date and Golf Tourney

Les is scheduled for his PEG surgery Friday morning at 9:45.  We are so thankful we got this scheduled! The bummer part is that he was going to go fishing with his buddy Dan for a week, leaving Saturday. Les is hoping he can drive north into Canada himself midweek and join them.  We will stay at UW for sure one night - they will be monitoring his breathing, which was a concern last week when he was in surgery.  Les has also received a suction machine.  He likes to use it to suction out all his excess saliva BUT it's not exactly something you can put in your pocket so it's not always easily accessible!  He has also started using a small patch (Transderm Scop) behind his ear which is supposed to help the saliva, but so far it's not doing a very good job.

New toys!  A BIGGER magic bullet & a suction machine :)

Also, unless you live under a rock you have probably already heard about the golf tournament that is being put on in Les' honor.  The UPS guys have a golf tournament every year, followed by a barbeque. Back in December, driver Zach told Les he would like to have the tournament in Les' honor.  Then driver Gunnar got involved and then our son Kris got involved and then our friends Rod & Lana got involved---and now it's a big deal!  These people are amazing!  Driver Ed is in charge of the t-shirts, which are being made where our daughter Leslie works.  The original thought was that we would use this benefit money towards the Dynavox machine.  (By the way, the Dynavox machine is on its way - praise the Lord!!!!!).  This machine is approximately ten thousand dollars.  Les' UPS insurance has done a great job paying for most of the medical bills so far, but they will only cover a portion of this machine.   In our ALS booklet, one of the first things noted is that ALS is such an expensive disease.  We are SO SO THANKFUL knowing that we will have help with some of these expenses.  It's very humbling.....we never thought we would be at the receiving end of any kind of a benefit!  But again, we are very thankful for our UPS family, and for the community we live in.
Here is more info on the golf tournament:

Weekend on the River

After last Thursday, Les and I decided to head out of town.  We were pretty disappointed with the feeding tube situation, but the next day we woke up and said "it is what it is"......  We left Saturday noonish and drove to Yakima.  It's the Palm Springs of Washington ya know!!  I lived in Yakima after college; Les was long haul trucking at that time.  We got engaged in Yakima during one of his visits. Last weekend we drove back to my apartment where it all began....kinda fun! We had never been back there before.

From Yakima we drove to my cousins farm on the Columbia river just north of Hermiston, Oregon.  It's been a few years since we've been there so we were way past due to visit.  We had hooked up with them in Palm Springs this winter and told them we were coming.... We had a relaxing afternoon catching up and sitting on the deck overlooking the river.  One of their sons (all three of their sons work on the farm) told Jody he needed a swather part; they made some phone calls; Jody fired up his airplane and took off with Les to get the part in Quincy.  They were back in a little over an hour....I don't think Les stopped smiling the whole time :). 

 

My other cousin Lori and husband were just back home from the UW.  Dennis has been there off and on the past 7 months...we have visited with her there twice.  Praise The Lord that Dennis is home! Such a fun visit and so special when they all prayed over Les.  We had a great time hanging out with cousins and their kids and grandkids.  Jody and Debbie were GREAT hosts; they have lots of stories!!  That area now grows alot of grapes and has become very beautiful.  Pretty desolate in areas, but we enjoyed the quiet vastness.  Les and I love to drive and explore new areas - this trip was great for that.

We are back home and still haven't heard when Les' next procedure will be.  We are trying not to be anxious about that.  He is having more and more difficulty swallowing and is still dealing with so much excess saliva in his mouth.  Please pray that we can get that under control, and that we will get the feeding tube scheduled soon.  THANK YOU for all your comments, calls, visits and prayers last week after knowing we had had a bad day.  We so appreciate your thoughts and prayers.

Feeding tube failure

Not gonna lie, this was not a good day.  We were looking forward to getting the peg (Percutaneous endoscopic gastrostomy tube) inserted so Les could get more nutrients, AND more water into him.  The tube would also make it easier to take his pills - he often chokes while taking them.  I was kinda emotional this past week getting over the fact that we had arrived at this point of the disease, but we were both glad to get the procedure done.

A new place for us!

We arrived at UW at noon and Les was taken away by 2:00.  He couldn't eat since last night so was very hungry!  Also, he had lost 2 more pounds since last week; he weighed 198.  He hasn't been under 200 for a very long time!!

Anyway, they called me back to recovery about 3:00.  Les had an oxygen mask on since he had some trouble breathing while under sedation -  common with ALS patients.  I didn't like the look of that..... The nurse told me right away they were not able to put the peg tube in because Les' stomach is very high and under his rib cage.  When the tube went thru his mouth and down his throat it's supposed to inflate his stomach and then push against the skin, but it didn't happen that way.  The doctor came and explained in a little more detail.  I was trying not to burst into tears at this point!  There is another way to go in from the outside and insert a tube; we will wait to hear from Dr. Weiss about that procedure.  Les was VERY disappointed when he woke up and we had to tell him.  He was also very sleepy ;)

Funny side note, our discharge nurse knew we had a Dutch name and said she was from Michigan.  We told her Les was from northwest Iowa; she said her dad was a professor at Dordt College.  I asked his name - and he was one of my business professors!!  Can you believe it???  We also went to the same church after we were married with that professor.  She was very sweet and very concerned about Les (he had a couple choking spells while drinking some juice while recovering).

We are on our way home.  Not what we had hoped for today.

Anniversary #32 and Swallow Test

Where does the time go?  Last week we celebrated our 32nd anniversary.  Seems like it was just yesterday when I was a junior at Dordt College and he was a city police officer.  It was exactly 34 years ago when he drove up next to me on his Goldwing motorcycle and asked me if I wanted a ride.  Sure glad I said yes!

Last winter a group of our friends gifted us with a gift certificate to Semiahmoo Resort.  We just haven't had a weekend where we could use it.  This past weekend was open AND it was our anniversary so it worked out great.  Part of the deal was that our friends join us for dinner, so they did.  We had such a fun evening - we missed you Carl & Renee!! And thanks to John & Barbara for the wine!  It was so relaxing to get out of town and enjoy the beach.

This week Monday was Les' swallow test.  His speech therapist ordered it to make sure he wasn't aspirating when he ate.  I was so surprised to be invited into the "booth" to watch - along with the doctor, an intern and several nurses.  The doctor explained that Les is swallowing correctly, his difficulty is with his tongue.  BUT they only gave him small amounts of liquids and crackers - he chokes when he has a larger glass of water or when he takes pills.  Deanna (speech therapist) suspects that he is beginning to aspirate then.  She is glad that he is getting a feeding peg soon.  She ordered tests with the ear/nose/throat doctor because she suspects his vocal folds aren't working properly.  Sometimes Les will lose his breath and feel like his throat is being squeezed.  He is also experiencing more saliva in his mouth - because he doesn't swallow instinctively.

Les' throat/neck on screen, Les and Deanna in background

We popped in to say hi to nurse Jen.  She asked right away if Les is losing weight.  Since we don't have a scale in the house, we don't really know, so Jen weighed him.  He has lost 10 pounds since January.  Jen is also glad that the feeding peg is being scheduled - Les needs to keep his nutrients up!   His feeding tube surgery is next Thursday and he will spend the night down at UW.  Please pray for a successful surgery and a quick recovery.

We hopped over to Virginia Mason to visit Kris' friend Matt.  It was so good to visit with him.  Please pray for a miracle of healing for this young man!