Thursday, October 30, 2014

Tough Day

Les had a tough day. If you could see his wound you would understand why.  My parents spent the night in the same hotel as I so they drove me to UW.  We got to the room around 9 this morning.  Les was still very groggy from pain meds.  He said he was awake every 15 minutes through the night.  We hadn't been there very long when PT showed up.  She wanted to sit Les in a chair.  She had blue streaks in her hair so my dad asked her how they got there??

Anyway, she got Les in a chair but his blood pressure dropped, he got very dizzy and light headed.  Right about then, 8 people showed up in the room to discuss Les (just like on Grey's Anatomy!).   It was a little crazy for awhile, and Les was not feeling well at all.  PT disappeared so the charge nurse had to come help get him back in bed.  The docs all thought Les was doing great.  He was wondering about feeding, so they said they ordered his nutrition.

Les was then able to snooze and I was so amazed that he wasn't "hucking" up gunk all the time AND not constantly suctioning saliva!! Around one daughter-in-law Hannah and her mom picked me up for lunch.  When we got back to the room Les still had not eaten and he was still not feeling well and was getting a headache. Apparently the order for nutrition had not gone thru!!  Poor guy hadn't eaten since Tuesday night and all he had in his system was pain meds!  He finally got a feeding going around 4.  Sweet student Landi (who we have known since she was 4) showed up and it was so fun to visit with her!! She will be a very good nurse some day; she was very helpful.  Hopefully we will see her again tomorrow.

When I was leaving a couple interns were making the rounds.  They again said Les is doing great.  They thought maybe Les' head/neck pain was from surgery and their pressure on his neck while operating.  Les is staying in ICU again and I am glad!  He needs a good night of rest and some nutrition.  I am sorry I cannot answer all your texts and calls.  I am also very tired.

Wednesday, October 29, 2014

All is Well

Surgery went well! I said good bye to the patient at 8:30 this morning as they took him into OR.  A surgical nurse called me with updates every two hours, which was so nice. I ran back to our hotel to meet Leslie, who had driven down this morning.   Nephew James and his wife Kelsie popped in to say hi.  Leslie and I tootled around University Village; it was great to see the sun!   After we were back at UW we didn't wait in the surgical waiting room very long and here came Dr. Hillel, around 2:15.  Everything went well; surgery didn't last as long as they had expected.  Dr. was very pleased.

The anesthesiologist  called a bit later from the recovery room and said she had a patient who was giving her a thumbs up!! And, Les was NOT on a ventilator!!  Praise The Lord!!  She said he will probably need one tonight since he will be so tired, but so far so good.  My parents hooked up with Leslie and I about this time, and we PATIENTLY waited to see Les in his ICU room.  When we finally saw Les about six,  we were a bit taken aback with the wound sight.  Confirmed the fact I am not nurse material.... Les was very groggy, but able to communicate with texting.  Soon Dr. Hillel popped in and wanted to take out all plastic trach tubing!  We did not expect that so soon.  Dr. Again confirmed all went well.  Les has a bit of pain (duh!!) but his sweet nurse was working on that.  He is in very good hands.

I am pooped, a very long day.  Thanks for the prayers; we both commented this morning that we knew people were praying because we were both so calm and at peace.  Thanks for all the messages; we cannot answer you all back!!  More updates tomorrow.

Tuesday, October 28, 2014

A Special Sunday

We experienced a God filled Sunday morning.  Les was invited to "speak" at his friend Ben's church.  Ben has been preaching on Job, so Les' words fit right in with Ben's message.

After the sermon, a sweet girl sang "Oceans".  When Ben had told Les she was going to sing this song, Les showed Ben that this song was on Les' list of favorites.  She did a BEAUTIFUL job.  And then Jeff walked to the front of church and wanted to share how he has known Les - meeting Les as a UPS driver on his route.  They realized they were both Christians and then realized they both knew Ben - it was a very cool story.  Jeff and his wife have had some medical struggles in their life with their sweet boy Jensen.  Jeff had some powerful words and we so appreciated his sharing.  It's so amazing to see how God weaves friendships and stories throughout our lives!

Ben and Les have been friends for over 19 years.  He was not a pastor when they became friends - just a crazy Canadian, eh?  He was single when they became friends.  It's been our privilege to witness his marriage and now Ben and Kate are raising two fine young men.  Les walked with Ben through his journey to become a pastor.  What a great thing for Les to have a pastor as one of his best friends as he walks this journey!  Ben has been invaluable to Les and we thank God for having Ben in our lives.

Thanks again to our friends, family and neighbors who came to church Sunday morning to support Les.  We truly are blessed!

Friday, October 24, 2014

Surgery Scheduled!!

Les' larynx surgery is scheduled for next Wednesday, the 29th.  We spent most of Tuesday at Pre-op appointments at UW.
My view in waiting room
Who knew?  First we needed a pre-op with the nurse who works with Dr. Hillel.  She went over the actual surgery (even tho she's never been involved with one like this!!).  She told us that along with Dr. Hillel there will be a fellow and a couple of residents involved.  She gave us this diagram, which is  a pretty good picture of what will be going on.  Les has a video of the surgery - if you want to see that, you can come and visit!
Les' trachea will be pulled up and stitched to his throat skin.  Hopefully by the time he leaves the hospital, he will have no plastic trach to mess with, or suction out, or clean.....  His swallowing will be direct through to the esophagus,  so no chance of aspirating since it will be separated in surgery.  He is hoping and praying he will be able to swallow more than just thin liquids.  While Dr. Hillel is in that throat area, he is also taking out two of Les' saliva glands.

Our second pre-op appointment was with the nurse and anesthesiolgist.  They went over all Les' physical stuff, making sure his heart is healthy for surgery, etc.  This nurse talked about AFTER surgery.  What to expect when he wakes up (lots of tubes, will be in ICU) and the duration of his stay in the hospital (5 to 7 days).  Sounds like he will got LOTS of attention while he is there - again, he is kind of a unique case so everyone wants to be involved :)

Last appointment was a (quick??) replacement of his feeding tube since his has been leaking a bit. They said it would take a couple of minutes - HA! Overall it took about an hour;  the actual swap out took about 5 seconds.  At this point of the day, we were exhausted and hungry and ready to get out of there!

SO, please pray for peace about all of this, and also for a successful surgery.  Because of his condition, there are of course more risks with this surgery, but he is willing to take those risks in order to have a better quality of life after surgery.  Les is actually pretty excited.  The reasons he is doing this surgery are:  A)  No more saliva.  He has had SO MUCH lately and it is such a pain to be messing with that all the time.  B)  He will be able to breathe easier through his trachea hole - no plastic tubing in the way.  And he won't have to suction and mess with that plastic trach tube.  C)  The ability to hopefully eat and swallow again.  D) Chances of aspirating will be minimized.

FYI, Les is once again "speaking" this coming Sunday morning, this time at his friend Ben's church.

Thursday, October 16, 2014

Three Month/ONE YEAR!!! Check

Wendesday Les had his regular 3 month check with Dr. Weiss, the neurologist.  It also is the one year mark since he received the diagnosis.  What a year it has been!

On our way home last evening, Les was kinda down.  He said "ya know, they never tell me good news.  They just confirm what I already know - my symptoms are getting worse."  Yes, this is true.

Les' first appointment of the day was with the wheelchair specialist, who had a wheelchair rep there.  They went over all the options with Les and Les made some decisions about what he would like to order.  Les isn't getting EXACTLY what he wanted, but it will still be a pretty cool chair.  He had those two guys laughing several times.

Next up was Dr. Weiss.  We barely got to see nurse Jen, which is a bummer.  We talked with Dr. Weiss about the larynx surgery, and he is all for it.  He said it is a "cutting edge" surgery but feels it will benefit Les.  His excess saliva will be drastically improved; the plastic trach can come out and Les will be able to get more air in, PLUS not have to deal with cleaning/suctioning the plastic trach.  We were still quite hopeful about Les' swallowing; Dr. Weiss wanted some swallow tests done.  That 45 minutes with Dr. Weiss goes WAY too fast.  We like him so much.

The next appointment was with the speech therapist, Deanna.  She did some minor testing on Les' swallowing.  She confirmed that his tongue does not move at all - which will affect his ability to swallow solids.  She also suspects that along with that, his swallowing "muscles" have probably gone downhill.  She will perform an X-ray swallow test while Les is recovering from surgery.  She said he should still be able to swallow liquids, and maybe blended foods.  Les was pretty disappointed over this.  On our way out, he did a quick blood test to check his liver (because of the meds he is taking).

At this point, he was pretty hungry.  He can feed with his "kangaroo" bag in the car but of course it was plugged and nothing was coming out.  Didn't want to stop in traffic!!! so he was patient until north of the city when we could pull over and he could at least get some nutrition in by direct syringe.  Didn't help the mood out at all!!  But when we got home we realized the cleaning fairy had made an appearance again AND an applesauce fairy had stopped by.  Love those fairies.

That evening, this was the Jesus Calling I read:

I shared it with Les.  We are feeling better.

Please continue to pray about this big surgery on the 29th. 

Sunday, October 12, 2014

Les' Interview/Sunday Sailing

A couple of Sunday's ago, Les was "interviewed" in our church.  He had been asked several months ago and it finally worked out.  He is using his Dynavox to speak.

We wish this video showed the standing ovation Les received at the end - we LOVE our church family.  Thanks to our family and friends who came to support Les that morning.

That same day we went sailing.  We left home and it was bright and sunny so we wore shorts and tank tops.   But - the bay was socked in by fog!  We first ate our lunch in the galley and finally headed out.  Our dear friends Bruce and Jermaine were our skippers and she provided our delicious lunch. (Jermaine and I work for the same sailing business) We didn't get to sail as much as we would have liked that day, but at least we got a taste of sailing.  Les has wanted to do this for awhile.  Our kids came along; our power boating/wakeboarding boys were very patient with this slow pace of sailing.
When we went to Europe a few years ago, we spent a lot of time with these two.  We had never met Bruce before, and what a blessing that Les and Bruce hit it off!  They were two peas in a pod - spent a lot of time looking for "wee fee".  Bruce and Jermaine made that trip so much fun.  We don't see them a lot but when we do, we laugh.  And then we pray.  We were scheduled to head to Europe with them again this week but realized awhile back we had to cancel.  I'm sure they won't have any fun at all.
Hangin in France

As Les contemplates this larynx surgery (see prior post), please pray that he makes the right decision and that he is at peace with that decision.

Tuesday, October 7, 2014

'Twill be a BUSY October

Today was the first of many trips to UW this month.  It was a foggy drive early this morning but once the sun came out this afternoon, it was a beautiful fall day.  The turning trees are so so pretty and the moon rising this evening was amazing.  God created a beautiful creation!

This morning our first appointment was with Dr. Hillel, the larynx doctor.  Les was scheduled for Botox but had decided against it.  He feels like he is getting a bit of swallowing back and doesn't want to lose that!  Les mostly wanted to discuss the laryngectomy surgery.  We had a good discussion with Dr. Hillel about this and Dr. is quite confident this would be a successful surgery.  What Dr. would do is remove the larynx.  He would take the top of the trachea tube and attach it to Les' trach opening in neck and that would be Les' breathing tube (and the plastic trach tube could be taken out!).  Dr. would create a separate tube through the esophagus.  This would allow Les to swallow again (hopefully!!) and the chance of aspirating would be much less.  It's a bit more complicated than this, but in a nutshell this would be the procedure.  Dr. Hillel has done 5 of these in his career, which tells us how rare it is.  BUT if Les can eat again and decrease his chance of aspirating, we feel it would be a good thing. Doctor would also remove two of Les' saliva glands at the same time.  This would be awesome because of all the excess saliva Les has--and then no need of Botox anymore!

Second appointment was with Physical Therapy to fit a wheelchair.  We found out today that a wheelchair can take up to 2-3 months, so we felt like it was time!  Les is tall; if our insurance would cover most of a wheelchair, we feel it would be beneficial to custom order one.  He is getting more unsteady on his feet and we know that he will be dependent on a wheelchair in the future.
Crazy driver!!
Last appointment was with a new doctor in a new department.  Dr. Benditt of Pulmonary.  This ended up being a 2 hour appointment!  First we met with his associate, which is normal at this teaching hospital.  Then Les did some testing with Gil, the lung guy. He could only do a simple lung test through the trach tube, but what he could do was encouraging to us.  Gil felt like Les' lungs have not deteriorated too much since 3 months ago.  Another more sophisticated test will be done in the future.  Gil also worked with Les on the cough assist machine (which we already have) and showed Les how this helps with coughing up gunk through the trach tube.  SO much more efficient than the small portable suction machines we have!  We FINALLY met with Dr. Benditt.  He agrees that the larynx surgery would be a very beneficial surgery for Les.  He would like Les to participate in a sleep study after the larynx surgery.

All in all, it was a very encouraging day.  Les at this point is excited about trying this surgery.  We were encouraged with all we heard today.  Next Wednesday is our 3 month check with Dr. Weiss and we will double check with him about the larynx surgery.

Thanks for your prayers today.  Thanks to the soup fairy and the window cleaning fairy.  We are loved and we feel it!!

Wednesday, October 1, 2014

Another Surgery, Another Success

Les had his prostate surgery this morning.  It was at the urology clinic and we were very thankful for that.   We like Dr. O'Keefe alot - he is very direct and just tells you like it is.  Surgery was at 10:30 and they told me it would be an hour.  I drove away to run some errands and I have to confess that I was a little angry.  So unfair!  Why this on top of everything else??  My tears come at strange times and this was one of them.

I was back in an hour and had just sat down in the waiting room when I was called back to post-op.  What a relief it was so fast!  Les was groggy but gave me a thumbs up.  Whew!!  The post op nurse and I sat with him while he was waking up.  It wasn't too long and he asked for his phone and was typing away.  He wanted the nurse to watch a YouTube video.  What??  I didn't know anything about this.  Apparently his friend Rick had showed him the trailer for "Dumb and Dumber II" and Les thought it was appropriate for this situation.  After him and the nurse were cracking up, I got to watch it and YES it is VERY appropriate!!  The doctor came in and gave us a good report.  Before he could leave Les wanted him to watch the video.  Dr. O'Keefe also had a good laugh, and was probably late for his next surgery!!  Rick, we will be calling you..........
 You only need to watch the first couple of minutes:

Les is home and sleeping/feeding.  He hasn't been able to eat since last night.  We are very thankful the surgery went so smoothly.  I am thankful for his humor.........  Once again, the nurses were very kind to him.  I came home to soup in the fridge and I am very thankful for that, and for all your prayers.

I hope to blog soon about Les and his "interview" on Sunday.  Stay tuned!!