Thursday, May 29, 2014

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.

Thursday, May 22, 2014

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.

Tuesday, May 13, 2014

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!

Saturday, May 3, 2014

Iowa Bestie and New Appointments

My best friend from Iowa came to visit. We have been friends for about 30 years. We have been through some tough times and some happy times together.  She was SO good to have around for a few days. (And thank you to her husband Evan for letting her come!). She is from Iowa ya know, so we had to do some northwest sightseeing!!

the famous gum wall
Birch Bay
Les went to eastern Washington with Steve for a few days this week.  Steve was working and Les was hanging out.   I got caught up on work after having company, AND got started in the garden. 80 degrees--are you kidding me??  Love it.

We have some important appointments coming up.  May 12 is Les' swallow test.  This test makes sure that he is swallowing properly and that no food is getting into his lungs.  That would be bad. It will also help his speech therapist in giving Les tips/help with chewing and swallowing.  The next important date is May 22.  Les will be getting his feeding tube then.  It is better to do that while he is healthy.  That will be an overnight appointment.  Les is still eating pretty good; he puts a lot of his meals into the Magic Bullet.  Sometimes he has a hard time swallowing his pills, so it will be nice to put those through the tube.

Last important date is June 21.  Our UPS friends are sponsoring a golf tournament in Les' honor.  Our son Kris and our friend Rocket have jumped on board to help with this.  So awesome to experience this support.  More details to come about the golf tourney.

From Jesus Calling recently:  "When some basic need is lacking - time, energy, money - consider yourself blessed.  Your very lack is an opportunity to latch onto Me in unashamed dependence.  When you begin a day with inadequate resources, you must concentrate your efforts on the present moment.  This is where you are meant to live - in the present.  It is the place where I always await you.  Awareness of your inadequacy is a rich blessing, training you to rely wholeheartedly on Me.  The truth is that self-sufficiency is a myth perpetuated by pride and temporary success.  Health and wealth can disappear instantly, as can life itself.  Rejoice in your insufficiency, knowing that My Power is made perfect in weakness."  
2 Corinthians 12:9 "My grace is sufficient for you, for my power is made perfect in weakness"