Demo Derby!!

So our son was in the demo derby at the fair last week.  Awhile back there was an auction fundraiser for his friend Matt who has passed away. One of the auction items was a derby car and the company Kris and Matt work(ed) for bought the car.  Somehow Kris ended up as the driver of this car.  The first show was in the afternoon so Les, Leslie, little man and I went to watch.  Kris did well; he got some hard hits tho!  After our Sunday in the ER before the derby day, Les was pooped so stayed home for the night derby.  I went back and, again , Kris did so well for a rookie!! Matt was honored - it was pretty cool.

YIKES!

Les was busy the week before his trach surgery and I want to thank his friends.  He spent part of a day with his friend Brian who is a truck driver - they took a load up to Darrington.   Les drove up the mountain and did a LITTLE hiking with Rick (sorry Rick, the selfies weren't too great!).  He went with Steve to help trim hooves on Steve's horse.  THANK YOU for taking Les out and about.

Home Again, Home Again

Monday evening

Les came home today!  I was at the hospital at 7:30 AM to meet with Dr. Verneuil.  He changed out the ENTIRE trach tube with a clean one.  The site of that hole in Les' throat kinda got to me.....not so sure I will ever be able to do that change-out.  The cleaning and suctioning I can handle, but that open hole is a bit much for me.  The change-out caused a bit of stress on Les' throat and it took him awhile to settle back down.  This afternoon he is breathing great and has been resting comfortably.  We need to get him a more comfortable lounge chair to hang out in.

The two of us are exhausted and overwhelmed.  So much to learn!  The medical supply guy met with Leslie at our house this morning (thank you Leslie!  She is an excellent nurse......) and once again my office is overflowing with new medical items.

Thank you to neighbors chef Dan and Jeany for doing our yardwork.  Lu, your soup and other goodies are delicious.  Thanks to mom and dad for the fresh crab.  Thank you Rose for the beautiful flowers.  All these gestures bring us to tears.

Happy Hank!!

Sunday

Another fairly good day, and we are thankful for that!  Les got kicked out of ICU at 6:30 this morning.  I'm glad I had organized everything last night before I left.  His new room is on the same floor, but on the surgery side.  He is all by himself in a large room and it is SO QUIET.  He is happy.  Dr. Steve came and sat with Les early this morning; Dr. Verneuil stopped in so the two doctors met and chatted a bit.  Les thought it was pretty cool that they both helped with his suctioning this morning :)

Les had quite a few visitors today and we are feeling loved; he was dozing off a bit but I guess that's okay since he is still trying to figure out this whole trach thing.  Kris and Hannah were there this noon when the respiratory therapist and the speech therapist came in - I was thankful they were there.  Hannah and I went off to a bridal shower for her; Kris sat with Les until I got back.   That was Hannah's last shower - the days are ticking away!  We are getting VERY excited!

Our late afternoon was pretty quiet, we both napped a bit.  Les was coughing/spitting up the blue ice cream the speech therapist tried to get him to swallow.  She was like "I'm sorry but you aren't swallowing"  Um, pretty sure we knew that.........  I don't think she had checked with UW before that test!  Other than that, Les felt kinda crappy because of the pain meds so we switched him to Tylenol.  His stitches around the trach are really itching so he got approved for some benadryl.  He was sleeping this evening EVEN when Brett, Leslie and little man were visiting.  I got him cleaned up a little earlier this evening, shut the lights out, and headed home before dark.  I think he will have a much better night's sleep tonight! 

Again, thanks for the visits and the prayers.  Les was prayed for by our church this morning - we are comforted and blessed by those prayers!

A Good Saturday

Saturday was a good day!  When I first saw Les in the morning he was so excited to tell me that he had slept SO good, AND he slept flat on his back.  He hasn't been able to do that in several months.  He had some "training" on suctioning out the trach tube this morning and has been doing most of the suctioning all day.  He also walked several loops around the ICU unit.

I took a break at noon for some wedding fun.  Hannah had a craft day at her mom's - some of her friends, her mom's friends and my friends got together to craft some fun wedding things.  I knew that Jan would have yummy food and mimosa's, so that MIGHT have been part of the reason I wanted to go...... I'm sad we didn't get any pictures there!

Everything is better now

We had quite a bit of company today, and of course several people came at the same time this evening.  My evening meal was delivered by our neighbor chef Dan and wife Melinda; thank goodness I got my dinner before all our visitors got kicked out! I guess that the 9 people in the room were a few over the 1 allowed......  Les' roommate is a very sick man and tonight he had some "emergency" issues so it was a very busy room.  Because of that, Les didn't get much attention from the nurses.   Les had a few suctioning issues this evening, but otherwise is doing great.  There was talk of moving Les to a regular room but that hadn't happened when I left at 10:15.

From Jesus Calling a couple of days ago:
"Come to me when you are weak and weary.  Rest snugly in My everlasting arms.  I do not despise  your weakness, My child.  Actually, it draws Me closer to you because weakness stirs up My compassion--My yearning to help.  Accept yourself in your weariness, knowing that I understand how difficult your journey has been.
Do not compare yourself with others who seem to skip along their life-paths with ease.  Their journeys have been different from yours, and I have gifted them with abundant energy.  I have gifted you with fragility, providing opportunities for your spirit to blossom in My Presence.  Accept this gift as a sacred treasure: delicate, yet glowing with brilliant Light.  Rather than struggling to disguise or deny your weakness, allow Me to bless you richly through it."

Successful Surgery

Whew, a long day but a successful day!

Les rested comfortably in ICU last night and most of today.  He had a visit from the Ear/Nose/Throat surgeon Dr. Verneuil this morning; Dr. Verneuil also called me.  Nurse Jen from the UW called - it's so awesome that these doctors are communicating with each other!  As Dr. Verneuil said, he is "working under" Dr. Hillel at the UW and did the surgery according to Dr. Hillel's instructions.  We were so glad to have the surgery here and not at UW!

Waiting with my parents

Surgery was right at 4, right on time!  Leslie and I walked around a bit and were back in ICU at 5 - the nurse told us Les was on his way back.  When we saw him he was awake already.  He said the breathing relief was immediate.  Praise God!  We met with Dr. Verneuil and he was pleased with the surgery.  He had made some small adjustments in the trach placement as per Dr. Hillel's request.  Dr. Hillel has a few other surgery options for down the road - these surgeries would ease Les' swallowing issues and decrease the chances of aspirating.

Les did have some difficulty with some "crap" in the back of his throat so between suctioning through the trach and his throat, he felt better.  The nurses told us they were so impressed with his independence and ability to care for himself i.e. crushing his own pills and inserting through his peg, suctioning himself, feeding himself through the peg.  They also asked if he was working out - he was in such good shape.  We said, well he used to be.......... He finally had a feeding around 9 this evening.  He weighed in at 183 so needs to keep the calories going in.  Not much pain and he was getting very sleepy.  I left around 10 for home. 

Thanks to Ben for the visit this morning; thank you Isaiah and Andrew for mowing our yard.  Thanks to my parents for sitting with us before surgery.  Thanks to Leslie and Hannah for sitting with us.  They are on the list for trach training tomorrow!  Thank you Lori for hanging out and asking questions that I wouldn't think of.  Thank you elder Don for popping in.  Thanks for all your texts, phone calls, messages and prayers.  Sounds like Les will be hanging out in the hospital for several days, so we ask for patience and healing.  He took a couple of "selfie's" of his trach, so figured I could share a picture.

Surgery tomorrow!

Another turn of events!  After spending Sunday afternoon in the ER (see earlier post), Les felt pretty good Monday and Tuesday.  Wednesday he had a little more trouble breathing deeply and Wednesday night didn't sleep much because of the breathing issue.  This morning was about the same.  I HAD to run some errands for work this afternoon, and Les sent me off.  I had just talked to neighbor nurse Kay so I told Les that she was home if he needed her.  Well, he needed her.  He texted her to come over; she did; she talked to the Ear/Nose/Throat doctor and he listened to Les' chest through the phone and wanted Les to go to the ER.  (Of course he needed to change his clothes first!!)  Kay called me to meet them at the ER.  I got there first so I checked him in.  Again, when they know the patient has ALS, the patient gets extra TLC.  That silver lining again.

LONG story short, Les is having tracheostomy surgery tomorrow morning.  For awhile we thought we were headed to the UW for surgery, but the UW doctors talked to the local ENT doctors and they decided to do a simple trach surgery instead of more complicated options and the local ENT doctors are well equipped for this surgery.  Les has researched this surgery so was very comfortable saying yes.  Around 8:00 they shipped him off to ICU for the night.  Since he has had two breathing emergencies in the past week, they want him in ICU to be watched closely through the night.  A relief for me!

SO, please pray that we can both sleep tonight.  Pray for a successful surgery.  Pray that Les will settle down medically so we can FOCUS ON THE WEDDING.  Pray for our kids - this is hard on them!  Thank you!  I've said it before and I will say it again - we feel your prayers.

Thank you to neighbor nurse Kay for her help today.  She is a blessing.  Thank you to Hannah and her mom Jan for bringing me dinner.  Thank you to Ben for the coffee, the visit (we all had a fun visit with the Dutch nurse!), and the prayer.  We are grateful.

Speaking Dutch with the nurse!

A New First - Emergency Room

Since Botox was injected into Les' saliva glands, his swallowing has been compromised.  We believe it's from the Botox; we won't know for sure until the Botox wears off. Anyway, Sunday morning Les had his second choking episode in a week.  He believes he had acid reflux come up and since he can't swallow, he can't do anything about it.  He chokes quite a bit and uses his suction machine and cough assist to try to move things in his throat.   He panicked a little this second time and had me text Dr. Steve (his doctor here in town) and also neighbor nurse Kay.   Kay was able to pop in and check Les out and Dr. Steve called a couple times.  They were both a little concerned; Steve said if Les continued to have labored breathing he should have an X-ray of his lungs--aspirating is a huge concern for ALS patients.

After Les had a small feeding, he was still having trouble catching his breath and felt like he had phlegm in the base of his throat that his suction machine couldn't reach. He made the decision to go in to ER and get rid of that phlegm.   We got right in and didn't wait too long for a doctor!  He ordered X-rays of Les' lungs and throat/vocal chords.  The X-rays showed his lungs were clear, which was good news!  Since Les still had difficulty breathing, the ER doctor called in an Ear/Nose/Throat specialist.  We waited quite a while for him to get there.  There is definitely entertainment in the ER - we had a drunk/high person across the hall screaming at the top of his lungs.  And he wasn't screaming nice things! :)   But it was still a long afternoon.

The Dr. who came was the same ENT doctor Les saw a year ago before his ALS diagnosis.  We like him, he is very matter of fact and efficient.  He did a scope through Les' nose to see what was going on in Les' throat.  This Dr. also noted that Les' vocal chords are not working properly and there was mucus pooled behind his vocal chords - which was what Les could feel but couldn't get rid of.  He explained that this is probably the disease progressing.  There is a slight possibility it could be from the Botox but we wouldn't know that until the Botox wears off in 6 weeks or so.  The vocal chords also affect our breathing so that is why Les has experienced more difficulty in breathing.  The Dr. said this will more than likely keep happening.  If it gets to the point where Les can't breath, then a breathing tube would need to be inserted.  The Dr. suggested a few meds that Les can try to thin the mucus so it doesn't pool.

We will pass this information on to our Dr. and nurse Jen at the UW and find out if they have any further insight.  Thank you to nurse Kay (and her husband) for visiting twice.  She is a blessing to have as a neighbor.   Les' sister just mailed us these sweet little cards to hang wherever we choose.  Perfect timing Linda.

New Developments

A quick update on the Botox.  It's working great - Les has hardly any saliva.

The not so great part?  He can't swallow anything.  Not even a sip of water.  When he swallows anything he has awful choking spells.  We are thinking it's the Botox; we were told that was a possibility.  SO Les has about 6 weeks to decide which option he would prefer--lots of saliva, or no swallowing.  What a choice, eh??

He is currently getting ALL his nutrition and water through his feeding tube.  He misses eating - even his blended foods!  He misses the taste.  I suggested he just chew food up and then spit it out.  We'll see.  He's taking in 5 or 6 cans of his nutrition a day.  These feedings take awhile, about an hour each session (which is usually 2 cans).

Also an update on the Dynavox speech machine.  Not sure if I ever blogged about all the problems we were having with it.  I spent HOURS on the phone as the go between between Les and the Dynavox people.  We think it was a lemon!  They finally approved a call tag and had UPS pick it back up.  We didn't hear anything from them for several days.  And then last week a brand new Dynavox showed up with the UPS man!!  Les is happy to have it back.  He was pretty good with  using just his phone app which spoke his texts, but the machine is much nicer.  Plus the internet is on it, so it's like an iPad.

Les also received his BiPap machine, which he wears when sleeping.  I think he is sleeping much better.  It's a quiet machine, so it doesn't bother me.  And today Les received a cough assist machine.  He requested it yesterday after having a horrible choking spell.  He can't swallow at all, and had burped up what he thought was acid reflux and he just couldn't get rid of it.  We called Jen at UW and she suggested the cough assist.  Les doesn't need it all the time since he still has about 70% lung capacity, but in those situations we hope it helps.   All kinds of fun new toys at our house!

I need to give a shout out to Les.  Even without being able to speak at all, he continues to run errands for me.  He goes to the grocery store, gets gas in my car - whatever needs to be done.  If I were in his shoes, I don't think I would do that.  Pretty sure I would stay at home and not go anywhere!!  I greatly admire him for getting out in the world and being as normal as possible.

Therapy and Botox Part II

We had a LONG day at UW on Tuesday.  We had been staying out at Birch Bay so I was a little crabby pants about spending a whole day in Seattle when it was sunny and 82....

First up was the 9:00 with Physical Therapy.  We didn't expect too much from this appointment, and we were correct.  They just tested Les' balance and leg strength since he is a bit weaker.  With ALS you CANNOT overextend yourself physically or you will permanently lose that strength.  They suggested working on some balancing, walking just until tired.  They thought Les could start coming once a week to therapy.  "No thank you" we said!!   Our friend Lori (a physical therapist) can take good care of Les.

The second appointment was with Occupational Therapy.  This was a bit more informative.  We went over getting the house ready - grab bars, raised toilet seat, shower chairs, etc. etc.  We also went over tools to help with feeding, drinking, dressing.  We have a catalog to browse for items that Les feels would be beneficial.  Again, our friend Lori can help us with this.  We do want to be proactive and ready before it's absolutely necessary.

We had several hours' break until our 3:00 appointment.  On my agenda for the day was tracking down suit coat jackets for Kris' wedding.  We headed to NorthGate mall, hoping they would have everything we needed right there.  Ha!  Nothing.  But the salesman was very helpful and he looked up stores all across the US which carried that particular jacket.  I had some homework to do!!  We ate some lunch and headed back.  The traffic in Seattle was HORRIBLE all day long. 

Les' 3:00 appointment was with Dr. Hillel.  This is the throat specialist that he saw a year ago, our first appointment at UW.  Oh don't we wish it was only a vocal chord issue..........But that is water under the bridge.  It is what it is.  Anyway, we were told Dr. was 1/2 hour late so we grabbed coffee and settled in.  We finally saw Dr. Hillel about 4:30 and we were tired!  He did a scope down Les' nose to see the throat to make sure the vocal folds (cords) are still working properly.  Les' vocal folds  clamp shut; not allowing a breath when having a choking spasm.  There was also an intern in the room, Ginger the speech therapist, and a nurse.  The room wasn't big enough!  But then - Dr. said he was ready for the Botox.  WHAT??? we asked..........we were not expecting that!  Dr. Hillel said he had an order for Botox.  YES PLEASE! said Les.  Dr. Hillel is the EXPERT in this area.  He used an ultrasound machine on Les' throat as he guided the needle into the saliva glands.  On Les' right side, the Dr. had a bit of a struggle finding the saliva gland and used two needles and lots of juggling.  I think Les had just zoned out because he did not move! When Les sat up he had quite a bit of blood in his throat, but Dr. wasn't concerned.  Dr. made another Botox appointment for two months.  We have experienced that when anyone at UW realizes you are an ALS patient, they bend over backwards to help in any way they can.  A silver lining!

Throat scope

Botox into throat saliva gland

Les is anxious to see if this Botox round helps.  The other helped a little, but not much.  We will keep you posted!  He is also getting his BiPap machine this week and he is hoping that will help him sleep and his fatigue will be less.  We would appreciate your continued prayers.  As Les continues to deteriorate, we know that this road won't get any easier; we pray for patience, strength, peace, and the ability to find joy for each day.