Doc's Trek

Tomorrow is the day for Daryl’s surgery.  We did not post earlier to allow for us time to prepare for the surgery. During the surgery, they will do the tracheostomy, biopsy and get a good look around! After the surgery, Daryl will be in the ICU for a couple of days. Myself being an “old” ICU nurse, there is know  better place  to be! We anticipate he will  be in the hospital for a few more days.

We have had tremendous support from family and friends, which we are extremely grateful! I had to travel for a Leadership meeting this week, and “nurses” Scott and Doug (above picture) stepped in, with assists from Chris, Dan and Jeff.

We know that Daryl will not be able to speak for an undetermined period of time. Once we know more results, I will update everyone.

Goals for Daryl and his Medical Team:

• Prayers
• Successful  outcome

We want to thank everyone for all your prayers, warm wishes, and positive thoughts. It means more to us than you know!

 

 

Todays medical word is Epiglottis:  a flap of cartilage at the root of the tongue, which is depressed during swallowing to cover the opening of the windpipe. It closes to stop food from going down the trachea, and opens to allow breathing. Think of it as the valve on top of the vertical exhaust pipe on the side of a semi truck that opens and closes.

Our appointment with  Dr Mansfield was a mix of  good and bad news. The good news is some of the swelling is down and the vocal chords are moving. . .Positive!  Unfortunately, Daryl’s epiglottis is  now impeding his airway, possibly as a result of the radiation. This is not a good situation as it makes it difficult for Daryl to breathe, as a result of pooling secretions  and increase coughing.  He  has been on a high dose steroids for the past week. The dose had been decreased  and there has been a notable change. Steroids are not a long-term answer, due to their many negative side  effects. The  Dr’s recommendation is for Daryl to proceed with the tracheostomy.  This will allow Dr. Mansfield to do a much needed biopsy and have a good look at what is going on with Daryl’s throat.  We agreed this is the best solution, and need to move forward.  He will be having the surgery  sometime next week.

We will meet this challenge, like we do everything with a positive attitudes, love and support  from family and friends and our faith.  After the Dr’s appointment, Daryl was able to receive the Sacrament of the Sick from our priest, Fr. Alex.   This sacrament  consists of the priest laying hands on Daryl and anointing him with blessed oil and praying “thorough this holy anointing may the Lord in his love and mercy help you with the grace of the Holy Spirit. May the Lord who frees you from sin save you and raise you up” He anoints Daryl forehead, hands,  and Fr Alex also anointed his throat.   This brought us great strength.

Daryl’s prior to surgery goals:

• Nutrition: He is up to 3 tube feedings which he does himself . I think he secretly wants to be a nurse, or feels his nurse can improve her skills! Plus he drinks three Boost which both of those give him 2,100 calories/day. He will occasionally have soup, eggs or whatever sound good. He has  enjoyed a few of my Ina Garten Outrageous Brownies. Also the daily  “pine-mosa’s” have been quite refreshing for him!
• Strength: Walk around the house and visits for the mani-pedi, doctors visit and today a haircut!
• Sports-:It is postseason –  MLB wildcard and playoffs. His favorite sport and the Dodgers are  in  . . .. . . and the Cubs!

We thank everyone for the support, messages and most of all prayers. We feel blessed to have each of you in our lives!

 

 

 

This a picture of Daryl with his college fraternity brothers, Jeff and Chris. They were on a “tour” of an  island, very few Americans visited then, but is open to Americans, for now.

Friday was another stop on the  “Daryl goes to the doctor tour”. We saw Dr. Mansfield first, he scoped Daryl ( which is putting a thin tube down his nose to get a better look at his throat) and the swelling is going down. One vocal cord is working well and the other is still lagging in movement.  His airway is still at risk but seeing good  improvement, tracheostomy is on hold, for now!  Daryl will continue on steroids and antibiotics and we will visit our favorite Dr. again on Wednesday.

Next stop on our tour was to see a new oncologist, Dr. Kossman.   We are becoming pros at filling out paperwork! Our trick is to download all the forms and complete prior to arrival. (amazing more people cannot figure out this pearl of wisdom) This saves time, shortens the exposure to all the waiting room people  and always puts a smile on the receptionist face :).  Dr. Kossman  is a very gregarious oncologist, which is refreshing! He stated “I looked you up in the computer and expected, to see when you were admitted for your  trach. This is a pleasant surprise!” He confirmed our Radiation Oncologist had done the right thing by “blasting” Daryl with radiation. He cited a  seven-year study  by the VA to validate.  ( for us medical folks, it was fascinating!)  He is extremely knowledgeable and laid out the two plans. Plan A- cancer is back, surgery is then needed. Plan B-  no cancer, damage  is from radiation, need for long-term antibiotics and HBO. This does not mean for Daryl to binge watch HBO, it stand for Hyperbaric Oxygen treatments. This is a chamber where they place you in a high oxygen rich environment  for 2-3 hours  to promote healing.  HBO is  used to help heal wounds, after the “bends’ in scuba diving and by some athletes.

Goals:

• To continue to decrease swelling to perform a biopsy without having to have a trach. Go steroids, Go anitbiotics!
• “Fatten” up Daryl.  His g tube has been leaking so we at doing smaller feedings. Daryl has been drinking glucerna, “pine-mosa’s”  and has eaten some chicken McNuggets! Maybe if he continues to be good a Happy Meal!

Thank you for all the prayers and well wishes! It means everything to the Lu’s!

 

 

It’s me, two hands and a feeding tube Lu! I wanted to let everyone know how thankful I am for all your thoughts and prayers during this challenging “journey.”  My Faith in God, my wonderful “private nurse,” and all your thoughts and prayers are what get me through the day-in-day out “battle” that I find myself in.

I am not trying to be insensitive or offensive to others who have toiled and may have lost their struggle.  Many would prefer that I it look at is as a “journey,” something not to win or lose, but please forgive me, it will always be a battle.  One with tactics, milestones, small and big victories and of course many set-backs and defeats.

I’ve been feeling pretty good the past few days (although I suspect it maybe the steriods).  I’ve been able to partially swallow, and a result, partially eat some soft food!  Obviously a a huge step forward relative to the past month!

My next goal is to have a biopsy without having to have a tracheostomy.

We will find out tomorrow.  All in the hands of God, may his Will be Done…

Who know what milestone may come in the Spring?  Perhaps another selfie- my first ever above!  Just below the Nevada Footbridge on the Silver Apron above Vernal Falls in Yosemite Park.

Thanks again for all your thoughts and prayers!

Love,

Daryl

We did not share this on the last  post, because we wanted to confirm the next steps for Daryls care.   The results of the CAT scan and MRI showed unusual swelling, that the Dr believe was not “acting” like cancer but a potential abscess and soft tissues swelling. As a result, Dr Mansfield  was planning on scheduling Daryl for a tracheostomy ( incision made in the neck and inserting a tube to breathe easier) tomorrow, Tuesday.   Daryl would be having this “trach” for an unknown period of time to allow healing.  As devastating  as this might be, we feel lucky that it is not the extremely invasive surgery initial planned.

Today, as a result of the steroids and antibiotics, the Dr was able to see one of Daryls vocal chords moving and potential from the other cord. We were all excited about this “fantastic” progress in only two days! As a result, the trach is on hold for tomorrow!  We will see the Dr again on Friday, to re-evaluate. A biopsy is still needed to determine, what is going on and  rule out  a cancer reoccurrence,  but hopefully this can be done without the trach!  We are also seeing an oncologist on Friday to help monitor Daryl’s condition.

We had a very impromptu get together on Sunday, at Casa de Lu, with a few friends.  This was in anticipation of Daryl’s upcoming trach, and his inability to speak for period of time.  The day was a wonderful uplifting day for both of us! Many stories from college, PSK and San Diego tales were exchanged. It was a true blessing to see Daryl smile and laugh. This was the  best medicine!

ThE picture above was in Cozumel. Daryl and I love to scuba dive, so I thought it was only appropriate for today’s blog. The Lu’s are taking a nice deep breath today!

Goals:

• Maintain antibiotics, steroids and antifungal
• Pain control
• Nutrition Daryl has gain another 3 lbs and even enjoyed a few glasses of wine yesterday!
• Surgeon and Oncologist on Friday

Thank you for all the prayers, we feel the Holy Spirit looking over us and feel blessed to have all of you in our lives!

 

 

We have had a hectic week with Dr. visits, tests and follow-ups. We meet with one of the potential surgeons on Wednesday, Dr Mansfield. He displayed great knowledge, experience  and a wonderful  “bedside”manner.   He described Daryl’s airway as “attempting to breathe thru a coffee straw.” In order to get a better picture of Daryl’s condition, he needed to obtain additional  tests to determine the best plan of action.   He ordered a contrast MRI, CT and called the Imaging Center himself to arrange, ASAP.  He utilizes a team approach for his patients, adding key players to best treat Daryl.  After we left the initial appointment, Daryl said “this is our guy”. Dr Mansfield will be quarterbacking Team Lu! We will see him again on Monday for the game plan!

Friday we saw Daryl’s primary care physician, for a previously scheduled appointment. Dr Williams had received the update of Daryl’s condition from our Radiation Oncologist. He said, with his sense of humor, “Daryl if you did not have bad luck you would have no luck at all”  He also said ” I thought I would never say this but—-Daryl you need to gain weight!”  Not too often a Dr asks you to gain weight! Laughter is great medicine!

For more fun and excitement, next we went  for Daryl’s contrast MRI and CT. Always enjoyable to people watch in the lobby, maybe next time I will bring an adult beverage to soothe my senses.

Goals:

• Nutrition: tube feedings 3x per day and increased by half can at each feeding!  Daryl is drinking Glucerna and has  gained  5 lbs this week!
• Start new meds of antibiotics, antifungal and steroids.
• Pain is getting under control.  Manage his airway and secretions

Nurse Charlotte is on duty and has everything scheduled! Daryl is a cooperative patient. . . .so far. Nurse Ratchet has not had to make and appearance, but is on standby!

Thank you for all the support and prayers!

There has been some question on how to leave a comment. First  click on the post itself, such as” Preventative Maintenance”  Scroll to the bottom and there will be an option to leave a comment.  If you do not click on the post, the comment option does not appear.   This also allows to toggles to other post. Hope this makes sense from my extremely detailed IT instructions!

The comments can be viewed by others and Daryl frequently checks the page and would love some comments. He maybe making a special guest post! If any of you would like to post, let me know and I can give privileges ( I have figured that out)

Daryl ventured out yesterday to get a  spa mani/pedi from our good friends at Kay’s Nails. The ladies love him there and I think he gets better treatment than me!   This was his first adventure out of the house since having his g-tube on Sept 7th.   We definitely need to work on his ADL’s ( nursing term for activities of daily living).

We have had a few challenges since the tube,  getting everything regulated. Fingers crossed, things have been working well for the last few days.  Feedings 3x per day, plus able to give some of his meds via tube.  He is also eating  jello, pudding, Italian ice and occasionally some sips of vino!

Tomorrow we see one of the potential surgeons and have an appointment  on Oct 3rd with the other potential surgeon. Very excited to see them both, to keep this train moving down the track!

Goal: Nutrition – increase to 1.5 cans 3x day plus anything he wants to eat!  ADL’s- short walks everyday to increase strength. Pain maintain current plan that working!

As Billy Crystal says your hands “Look Marvelous”

 

To many, we have recently sent out a link to this site about Daryl’s change to his health. To some, this is new news,  and we apologize for the manner of finding out via an e-mail and blog. Our hope was the radiation would have done the trick. But it is what it is and we are taking one day at a time!  We appreciate everyone’s support and prayers

This web site blog is new and I am having some challenges, the goals was to not only  provide information but  to have the ability to respond with comments. I am hearing from many that there is no comment ability. Above is a screen shot. Click on this in the lower right hand corner and choose reader view. This should allow in the short term hopefully to comment based on  my technical IT abilities. Send a comment if this works! If any one has more knowledge of how to make  the site more ‘user friendly” or other suggestions I am all in!

This is a picture of the new Lu Happy Hour! Happy to report Daryl is tolerating his tube feedings and the wine is for the nurse!

Before the latest PET scan, Daryl had already decided to having a feeding tube placed. The rationale – the challenge in swallowing any food, let allow water could be very painful at times. Nutrition is the key to continued healing. The most efficient way is by placing a feeding tube directly in the stomach to bypass the need for  traditional swallowing for nutrition. On Sept 7th Daryl  had his “new appendage” placed.

The procedure did not take very long, but ended up to have a great deal of pain for Daryl. Since he is young, the tube is placed thru the muscle, which is the reason for increased pain.  The good news is that we are able to give some pain medicine thru the tube vs having to swallow. We will start with feedings tomorrow

Besides, lots of popsicle, his new favorite is  Lindy’s watermelon italian ice,  I encourage him to eat whatever he has a taste for.  Some times it is spaghetti “o” or an In-Out Burger, a few bites is a move in the right direction!

Daryl’s  goals: Pain management, more nutrition and rest!

Thank you for all the encouraging texts! Keep us in your prayers!