Doc's Trek

Some of you may be familiar with the classic TV show “The Dating Game.”  There is a new version we are playing called  “The Waiting Game”.

Let’s meet today’s  contestants:
Contestant number one: Hails from the kidney arena. I will work with Daryl’s kidneys  to ensure he is peeing enough and not retaining extra urine. (residual left)  I will make the  nurses decrease the  bladder  ultra sound checks. Pick me and  I will make your pee!
Contestant number two: Hails from the small bowel arena.  He has had some “passing of air” for the first time.  Pick me and I will make the  dream of number two come true for you!
Contestant number three: Hails from the pain pump arena. We are getting some relief and the pain pharmacist is a daily visitor. Contestant number three can interfere with success of contestant number two, but the doctors are monitoring both  closely. Pick me and your pain is a push of a “green button”

Daryl brought in a consultant, my Dad, for advice. (see picture above) This picture was taken while they were attempting to locate Half Dome in Yosemite. FYI, It is directly behind them. In this Waiting Game the choice is all three contestants!
All fun aside . . . The goal is to have Daryl’s small bowel start to work normally.  Once that happens we can begin to restart the tube feedings. The surgeons want his small bowel to be healthy and to start working normally before surgery.  This will allow for a good circulation and success for an optimal transplant.  Currently his only nutrition is thru the TPN in his IV. His endocrinologist says he is in good nutritional shape via the IV.
He has been sitting in the chair and beginning to take a few strolls outside the room. With bowel normalization  he should be able to go home and gather strength for the big surgery which will now be delayed through the first week of December. Attempting the procedure in his current state is not a  viable option as he would probably not survive the operation of that duration and magnitude.

Please excuse my humor, but sometimes it is the best medicine when explaining our current day-to-day goals.

Thank you again for all the prayers and well wished. They lift our spirits every day!

Love,

Daryl and Charlotte

We were hoping things were “moving along” but on late Wednesday, based on the CT findings and Dr Barone’s expertise, the decision was made to proceed with surgery.   Daryl was scheduled for 5:30pm surgery on Thursday. Thankful the Dr was able to bump his surgery up and Daryl went in around noon. They found not one, but three different areas of blockage! The Dr was able to clear all the blockages and place a new feeding tube. Daryl was back in his room around 5:00pm.  Obviously doing this type of surgery is very painful ,due to the incision made on his abdomen and all the manipulation of the bowel during his surgery (mainly looking for the blockage). We were blessed  that the Pain Pharmacists were able to change his pain meds to help him get relief and some rest.

The picture above is his “pain” button. When it is illuminated with a green light, that indicates Daryl can press it and receive a dose of his pain med. Needless to say he had a “vise grip” on this post surgery! The next few days we will be watching closely for any signs of infection and hoping all the plumbing begins to work again!

This is a slight detour, but if this was not found out in time, the other ‘big” surgery would not have been possible, using the small bowel. We are very blessed and thankful for Dr Barone and his guidance and expertise.

Keep  up the prayers and good thoughts!

Daryl had a very rough weekend, with  the placing of a nasogastric (ng) tube early Sunday morning to relieve over a liter of the fluid from his stomach.  Due to this recent development, Dr Barone was strongly contemplating surgery.  He  decided to watch him closely for the next 24-48 hours and do a series of  timed contrast x-rays to monitor the movement in his abdomen.  If Daryl did have to go to surgery, this would delay the ‘big’ surgery, which no one wants.  Additionally, due to his diabetes and deteriorated nutritional state, his body began to breakdown, resulting in diabetic ketoacidosis.       Plan: several IV’s to replace fluid, electrolytes and insulin,  and consult with the critical care pharmacist for pain management. All of this allowed Daryl to finally get some much-needed rest.   They also inserted a special IV called a PICC line, which is a more direct route to deliver all the fluids. Also it has a port  that  allows the nurses to draw blood from it, so he does not need to be stuck by the vampires!

Monday: A few early morning surprise “movements”!  We were all doing the happy poop dance!  (insert your own music and moves here).   Plan:  another x-ray, change his g-tube (to relieve some of the fluid, so we can remove the ng tube)  and consult  an endocrinologist to start him on TPN (IV nutrition).  While on his road trip to IR for the g-tube replacement, they determined the tube was not in the correct place, a small pocket of inflammation has developed, so a drain was inserted and the new tube is on hold.

Tuesday: What a difference a day makes! Daryl’s abdomen is still being monitored, he started  TPN (which includes his insulin) and his pain is under control.  This qualifies him for a room upgrade to a regular room!   We are waiting for someone to be ‘booted” to  free up a room. He is  smiling and ready to root the Dodgers on for a win, which would be a treat!

Thank you to everyone for the prayers, positive thoughts and well wishes! They mean everything to us and give us great strength on our daily changing voyage! I think we are ready  for more treats than tricks this Halloween!

Late Wednesday night, Daryl began to cough some blood thru his trach. . .. this earned him a trip to the ER! Thankfully he was seen very quickly and moved to the MICU. Good news:  We are happy to say the bleeding has stopped and the Dr  Mansfield, thinks it was caused from a small blood vessel or trach irritation. All the neck CT looked good!          Bad News: Daryl is having a great deal of pain in his abdomen. After a few more test on Thursday and Friday. The Dr’s believe he has a small bowel obstruction. Think of the bowel  as the pipes in sink, and the obstruction as the clog in the drain.  Fluid can be put in the top but till the blockage is cleared the pipes will not clear.   The Critical Care Dr and Dr Barone are  watching him closely to determine the next steps.  We pray that this will resolve itself.

Daryl has had quite a bit of pain so they have put him on a PCA (Patient Controlled Analgesic) pump.  This is the purple pump in the picture. The picture is the IV pump Alaris, which is the company I work for. I know that he has the safest technology!

This is a set back for us now, but we are praying it resolves and Daryl can begin to get strong for the “big” surgery. He needs nutrition and strength to be ready! Please keep us in your prayers for a speedy recovery and a return to Casa de Lu to recuperate!

Surgery Date: We are still waiting for the actual surgery date, of course, we would like sooner than later! Part of the challenge is coordinating  4 different surgeon’s  schedules. One surgeon returned from vacation last week to see Daryl and one is on vacation till tomorrow. Yes, surgeons are allowed to take vacations.😕 We hope they will be all rested and ready for Daryl. When you have the A team of surgeons, it is a challenge to orchestrate a day, but we feel confident we will know soon.

Insurance Fun:  I am learning many things about insurance, some good and some bad. For the most part our insurance company has been great with approvals and coverage. Last Friday I found out a nuance about tube feedings. The insurance covers Daryl’s tube being put in, syringes and supplies,  but not the actual feeding. According to the case worker, they only cover tube feedings for infants who need nutrition when leaving the hospital. Last I checked Daryl was not an infant. When my inquiring mind asked more, she explained it like this ” We do not cover food for a cardiac patients that needs a special diet, and this is considered food. ‘Interesting, I said, except one BIG difference . . . my husband can not eat or drink anything, and his only source of  food is thru the tube.’ Sorry your plan does not cover tube feedings.”   So we had challenges this past weekend to get “food” for Daryl. We used Glucerna, then tried his previous tube feeding formula, this was working till Sunday when he started to have severe stomach aches.  Nurse Charlotte, then came up with things to help the stomach aches and get things moving. Last thing Daryl needed was this! We have now ordered the Gytrol thru Amazon and are anxiously awaiting the delivery to make things consistent!  Still a head scratcher . . .

A dear friend of our sent us the Sunflowers, (pictured above) which really brighten the day! We take each day to appreciate the small things and know that God has a plan for Daryl. He has an amazing attitude and outlook for this voyage. Getting strength from his faith, prayers, family and friends.

To end on a positive note, the Dodgers are in the World Series! While there is a heat wave in SoCal, we will be watching from the comfort of our air-conditioned home. . . . yes we put in air conditioning in a few years ago, and we don’t need it often , but are very thankful we have it today!

Thanks again for all your prayers and support!

Daryl was able to return to Casa de Lu on Thursday afternoon. Getting discharged from the hospital is not an easy task when you have some new challenges like a trach. Our Discharge Planner Barb was wonderful in getting all the supplies we need for home . . . . .oxygen, nebulizer, suction machine, suction catheters, trach cannulas. .  . Daryl is pretty high maintenance now!  Don’t forget  nutrition for the tube feeding and pain meds. Final visits from Dr Mansfield, Pulmonary NP, dietician,  and physical therapy.   Sarah his nurse, for the last few days has truly been amazing! Daryl also had a nursing student for his final day, which let just say, Daryl still can add the Lu comments via sarcastic writing and gestures.  Many of you know what I mean!

Arrival: the Audi landed with passenger D Lu at Curlew street around 2:00 pm. This was quickly followed by Art with the  oxygen, suction machine and nebulizer for moisture  to his trach.  Daryl favorite is the nebulizer which is an air compressor that “sings” with a nice constant sound, that is not music to our ears. The kitties are happy and we are settling in to our new norm. The new “Sharp Casa de Lu” style.

Even though today was a long day it is great to have Daryl home. This is the best medicine to be at home, have fresh air and sleep in your own bed. It has been a long seven days since this last Thursday, but we are ready for the next phase. The time home will bring a great sense of tranquility and strength.

Above is Daryl with all his new “toys”. Nice to see him out of the green hospital gown!

Thank you for all the continued prayers and good thoughts!

Monday:    The last few days have been a roller coaster of emotion for us.  From the previous blog Daryl was scheduled for the very invasive surgery on Tuesday morning. One of the surgeons, noted that Daryl had a g-tube and therefore was not eligible to have the stomach pull up. This resulted in several planning and conversations among our great team of surgeons, for other options.  Late Monday, Dr. Mansfield cancelled the surgery. He is extremely organized and has a very detailed plan for each surgery. He wants to review all of Daryl’s scans, consult with the team and will meet with us in the morning.

Tuesday:  Dr. Mansfield, spent hours reviewing all of Daryl’s scans and consulting with the team of surgeons.  The new plan is to do a small bowel ( jejunum ) transplant.  The issue has been, a gap of 1cm needed  for the procedure, in order for  Dr. Mansfield to connect.  After the consulting with a plastic surgeon, this could be accomplished by another  procedure that  would give Dr. Mansfield about 5cm! The plastic surgeon is  Dr. Halls, who we know personally! Daryl had worked with Dr. Halls when selling the  Wound Vac and we are very good friends with his wife Autumn. The medical community, may seem large to many, but it is a very small community. We feel the grace of the Holy Spirit!

This new procedure has less risk, than the previous procedure, although still a hi-risk. This  will not require the Cardio Thoracic surgeons, which will decrease the need for manipulating the lungs and complications. Dr Mansfield will be coordinating with all the surgeons for a new surgical date.

Tuesday afternoon Daryl was able to transfer out of the ICU to a regular room! This was a wonderful change of scenery for us! Also there is potential Daryl can come home before his  next surgery! What a blessing this would be!

We are very  thankful and blessed to have so many people praying for us. We especially want to thank Dan, Chris and Jeff who have been great support during this roller coaster ride, as well as, many who have called and texted.

Keep the prayers and positive thoughts!

Love Daryl and Charlotte

We did not get the news we were hoping for, but we know God has a plan for Daryl.  All the biopsies, came back positive for cancer. This return of the cancer is extremely aggressive and circumferential in nature. The only option for Daryl is to have the surgery, which is  extremely hi risk and very involved.  The surgery will involve removing his voice box and esophagus, then “stretching” his stomach to make a new esophagus.  The reason to remove the esophagus is, as the Dr Mansfield put it best “it is a super highway” to many other areas.  He will have  the A team of Doctors led by our super hero, Dr Mansfield, who is a world renown head and neck surgeon.

Daryl  will have to  learn communicate thru other external apparatus, but technology is always changing! The good news, if all goes well, Daryl will be able to eat and drink again as normal!  I know he is already making a list of meals to have when he is able to eat. I think In and Out burger is on that from his last post!

This is a new battle, but we are ready to go to war with this cancer! We are blessed to have tremendous friends and loved one from all over supporting us on this voyage.

Fr Alex stopped by to give Daryl the Sacrament of the Sick- (Annointing with oils and prayers.) He brought us great strength for this  next  journey. Fr Alex also brought and a prayer card for the Blessed Charles de Foucauld,, who still needs to have one more miracle confirmed, to become a saint.   Maybe Daryl? It is a beautiful prayer we are saying often. Please keep all the prayers and positive thoughts coming!

Love Daryl and Charlotte

Greetings from the SICU at Sharp Memorial Hospital. Day 2 with the tracheostomy and things are as well as can be expected. Very happy to have Annointing of the Sick today when the Priest came by! ☺️

The only issue is right now no regular tube feedings! I am craving food, especially a Double-Double “animal style” from In-N-Out! There is one down the street, so I keep bugging Charlotte to go eat one! Vicariously is better than nothing 🍔😨!  I will just have to wait for my protein carb mix – YUM-O!!!

For now, I’ll have to be content with the Yankees game , my Lovely wife/private nurse, and the excellent staff of clinicians here in the SICU. Especially my nurse for the second time, Emilie pictured above.  She is the best! ❤️

As always, your prayers and support give me great strength. Thank you!  Praying for good biopsies, but mainly  praying for God’s will to be done! 🙏✝️❤️

Love,

Daryl

The surgery went well and Daryl has nicknamed himself ” Trach-Man Lu”  The Dr said his breathing was even tighter than last week, so a blessing to ge this done!  We are still awaiting the results of the biopsy and will know more Friday late or Saturday.

His breathing is much better. I brought him a erase board so he can write and communicate easier . Also some flashcards with words “Pain”, “Tired” , let me know if you think of Flashcards to add.  (maybe Go Cubs!) We were able to watch the Cubs game in his room. . . I thought I was going to need to be admitted after that game!

Thank you for all the prayers and well wishes. I read him all the comments or he goes online in the hospital, depending on the Wi-Fi. Below is a selfie by Daryl the trach man!