On Tuesday September 4 th Lee had a routine and follow up appointment with the liver team in Murray. His kidney function was elevated so they admitted him to IMC in Murray to help hydrate him and see if his kidney function would improve. Lee's mom, Jesse, Dee  and Jeri made it out to visit him on Wednesday.  

That day they also placed a small bowel feeding tube to help with nutrition and hydration. With his achalasia he was to the point that he was able to hold down food and sometimes not fluid. Achalasia: In layman's terms, the esophagus does not propel food towards the stomach, and the muscle of the lower esophagus does not relax to allow the food to advance from the esophagus to the stomach. The result is accumulation of food and saliva in the esophagus that needs to go somewhere. When upright, it can eventually trickle into the stomach by gravity. When lying down, it  can go back into the throat and even possibly get aspirated into the lungs. Thursday they took Lee to endoscopy to have a Botox treatment this it to help relax the pyloric sphincter and reverse the effects of the achalasia.

During that treatment Lee had some debris that consisted of undigested food and fluid in his esophagus he threw up and aspirated he was coughing and needed oxygen when he returned to his room. One positive note I can see life-flight helicopter pad from the window.

During the night he continued to cough and throw up. Yesterday morning they took him down to interventional radiology to have another small bowel feeding tube place they were not able to get it down. He once again threw up during the procedure and has a significant aspiration. Upon arriving back to the unit he was coughing and his o2 saturation's were 60%. A rapid response was called. A rapid response team, also known as a medical emergency team and high acuity response team, is a team of health care providers that responds to hospitalized patients with early signs of deterioration on non-intensive care units to prevent respiratory or cardiac arrest.  They acted quickly and stabilized his airway. They moved him to the Shock/trauma ICU and intubated him. He is currently on a ventilator with sedation. 

The doctor showed me his chest X-ray and you can see the areas where fluid has collected. Currently he is resting well and he seems to be stabilized. He will be ventilated for at least over night and the plan is to place the feeding tube before they extubate him. 
Today the doctors have decided to keep him intubated through the night and do a spontaneous breathing trial (SBT)in the morning to see how well he will tolerate being off of the vent.  

SBT involves the following steps:

• It be conducted while the patient is still connected to the ventilator circuit, or the patient can be removed from the circuit to an independent source of oxygen (T-piece)
• When using the ventilator a PS of 5 – 7 cmH2O and 1-5 cmH20 PEEP (so called ‘minimal ventilator settings’) will overcome increased work of breathing through the circuit (i.e. ETT)
• If still on the ventilator the patient should have ‘minimal ventilator settings”
• Initial trial should last 30 – 120 minutes
• If it is not clear that the patient has passed at 120 minutes the SBT should be considered a failure
• In general, the shorter the intubation time the shorter the SBT required

80% of patients who tolerate this time can be permanently removed from the ventilator

The hope is to place the feeding tube before the extubation.  SO the plan is to stay the course, increase the lactulose to help get the ammonia down and let the lungs heal a little better.

I hope to keep this updated so that all his family friends and followers can stay informed and keep him in your prayers. Thanks for following his story. 

Warning A couple of graphic photos from Lee's fall

On August 27th I got a panicked phone call from Lee while I was at work.  He has called me in the past to tell me he had fallen but this time was different I felt it in my gut when I answered the phone that there was something wrong.  Lee told me he has fallen down the stairs, he didn't dare get up and he could feel blood running down his face.  This was at 10:35 p.m.  I quickly told my charge nurse who sent me home right away.  Lee called me again as I was driving home and told me he was getting light headed and just wanted me to talk to him.  When I arrived home I found Lee sitting I found Lee sitting at the bottom of the stairs covered in blood.    I quickly grabbed a towel and pressed it against the wound that was bleeding the most.  I then called for an ambulance I did not feel like I should move him or if I could even get him into our FJ by myself.  While I waited I wiped some more of the blood off and looked down at his shirt although it was a black shirt it did have a superman symbol on the front that you could no longer see because of the amount of blood that was covering his shirt, needless to say EMS cut it off and tossed it. I want to give a shout out to the EMS crew and the operator that I was on the phone with.  Although I am a nurse I needed the reassurance that EMS was on their way and that everything will be okay.  EMS arrived got Lee loaded into the ambulance after a quick assessment and they were on their way.  I followed soon after I just grabbed Lee a quick change of clothes and checked on our Sadie girl.  Sadie was so scared she would not move from the top landing and just stood there not making a sound she was as still as a statue.  After I called for an ambulance I went up the stairs to put her in our room before the ambulance crew arrived she ran right into her kennel and laid down poor baby was quivering I did give her a quick love and shut the door.  I arrived to the Utah Valley Emergency Room shortly after the ambulance arrived. 

Lee looks pretty beat up and there was dried blood everywhere, the doctor and nurse decided the best way to get him all cleaned up was to head to the shower room and wash him up good and make sure there was no more glass left in the cuts. 
       
Just remember this is after I wiped him up at the house and the ambulance crew cleaned him up some to find the worse of the bleeding cuts.  The shower made a world of difference, I went in with him to help get him all cleaned and so I would better know where all the cuts were located.  I was still in my scrubs after all and I kept getting weird looks from the ER staff several asked if I was new, no I just left work and came straight here.  The ER crew were great this time.  I want to send a shout out the Lee's nurse Jake he was very nice and gentle while cleaning all of Lees wounds and then Bree took over,  not only was she very sweet and ind to Lee she let me use the computer in the room to catch up on all the charting I had not done before running out of the building to get home to Lee.  After x-rays and a CT scan there were no broken bones and no internal bleeding thank goodness.  Lee ended up with 6 staples in the head and multiple wounds that needed to be bandaged.  Here is a shot from the nest day after all was cleaned.  There are multiple lacerations on his head and his left arm is bruised and has multiple abrasions.

Here is the glass shelf that Lee fell into that did sit at the bottom of the stairs needless to say it will no longer be there and will be re-purposed into the table I will be making sometime this winter it will make the perfect frame.


There will now be nothing at the bottom of the stairs unless Lee decides he wants something there to sit on.  This was the bottom landing,  three stairs then the landing six more stairs than a landing and three more stairs before the top floor.  I had always worried about Lee on the stairs but he was so sure this is the house we were suppose to live in.  So he picked it out. 

September 1st:  Lee woke up having some severe pain in his left chest, pain medications, aspercream with lidocaine rub and heat did not seem to make a difference.  We headed back to the ER.   This experience was not all that good Lee was treated like he was only there for drugs.  The reason we returned was the uncontrolled pain, I know there had to be something else that was going on and I am on the cautious side with Lee it seems when there is something wrong it is a big something wrong. They repeated the chest Xray and for some reason did not see that he has 2 fractured ribs when we were in the ER the first time.  I just wanted to be sure there was nothing bleeding or no blood clots in his lungs.  I know from being a nurse that these things may not be seen at first but develop over time.  This doctor did not want to give Lee any addition pain medications told him to go home, continue with his daily activities and make sure he is taking deep breaths.  He did not see very sympathetic, just wanted to get him out of the ER.  I am a nurse and I do not like to utilize the ER so we do not go unless I feel there is nothing else I can do from home, I also felt that the insta-care would just send us to the ER for this issue.   Needless to say I do not like being treated like an idiot by the ER doctors and having an ER nurse that only came into the room once, and the xray tech just pushed him back into the room in his wheelchair and left him I got him back on the gurney.  I am a little disappointed with this ER 1 out of 3 times we have been there had been positive.  I am sorry that I have a very sick husband and we will be in the ER several more times.  Sorry that things happen when it is not 9-5 and I can take him to his regular doctor.  I just needed to rant a little and get that out of my system.  I am hoping to find a regular internal med doctor in the area that I can take him to and that will be flexible to work with him.  I hope things will get better soon I am trying to stay positive and keep my head up. 

Long time no post

                                                           

I know it has been a while since I wrote a post so sorry it it is long.
May 1st was moving day, Cathy and Ed (my sister and brother in law) came down from Wyoming to help me finalize packing and to help with the move.  Bonnie and Dee (Lee's sister and brother)also came to give us a hand with the final day with cleaning and getting us out the door.  I now wish I would have snapped a couple of pictures of moving day but it was so hectic that was the last thing I was thinking about.  Here is the last photo I snapped in our Hurricane house.

You can see I had boxes packed and some things ready to go.  I was able to hire a moving company they gave me a great rate and was only $500 more then I estimated the cost of renting a truck and the gas would have cost.  I also would have to hire movers on the Provo side to help unload.  I had plenty of help to load but no help to unload.  

https://crownmoves.com/

The movers were awesome to work with they did not think they would be able to fit all of our stuff in their trailer but they worked extra hard to fit everything. There was only two things they could not fit or move.  One was our safe although small they still needed special service fee that would have been an extra $500 we decided that it was small enough to fit on the back seat of our truck so we just slid it right in.  It really is just a small safe I am able to slide and move it by myself once it was in our house.  Our freezer also would not fit, we were also able to get that in our truck along the side of our motorcycle.  It is also a small chest freezer that belonged to my grandpa Pruitt.   We got to Provo and wow I did not realize how much stuff I really have.  I am still working on boxes and where to put everything.  I have made several trips to donate items and have sold several on Facebook.  I think the minimalist life style is looking good.  Although not to an extreme, I just don't need so many things that I do not use.   Here are a few shots from our new home, the mountains are just out my back door and there is a nice green space that is close to take Sadie on a walk.  

May 8th  Was my start date for my new job at Utah Valley Hospital on their Neuro Shock Trauma Unit.  I had a 10 Week orientation wow it was a long 10 weeks the first 8 weeks were on day shift.  Anyone who knows me knows I do not do mornings.  I love my orientation time, I felt that I did not see or do enough, I did not take care of many Neuro surgery cases, all in all I learned a ton but I still have a ton to learn.  I realize nursing school was 14 years ago but you never realize just how much you loose when you do not use it.  

This is the plan for Utah Valley Hospital, it is currently under construction.  I am currently working in the building in the right front which will be converted to lab and other services and my unit will move to the new tower in the right rear of the picture.  it is proposed to open in January.  right now it is a mess with all the construction the plan is to demolish the current patient tower that sits where the water feature is in this picture.

Lee had developed some swallowing difficulties over the course of the preceding few months so he had a EGD on May 15th.  We also go him set with a few other doctors here in Provo so it was a month of orientation, unloading boxes and Doctors appointments.  

June 4th Lee had an MRI of his liver, on his previous labs his cancer markers had increased, one of the main complications of liver failure and cirrhosis is liver cancer so his markers are checked every 6 months.   His MRI came back negative for cancer, but his MELD score went down to 15.  Lee was so upset he feels terrible but his MELD score does not reflect that.  

Lee also continued to have swallowing issues so he was scheduled for a swallow study, this showed that food goes to the bottom of the esophagus and sits there slowly trickling into the stomach.  He was scheduled for another study that will show if there is strictures or if it is motility problems.  Lee is also set up with speech therapy to help him with his swallowing and decrease his risk of aspiration. 

Neurology appointment Lee has slight confusion at times, problems with memory and balance problems so his liver team wanted him to see a neurologist.  The neurologist was unsure what was causing all the issues so he ordered an MRI of Lee's brain and to see a neuropsychologist.  The MRI of the brain showed normal brain (Who Knew. Just kidding) and showed a Thornwaldt cyst.

"Tornwaldt's cyst is a benign cyst located in the upper posterior nasopharynx. It is a relatively rare lesion and most are small and asymptomatic whereas some cause nasal obstruction, postnasal drip, occipital headache or eustachian tube dysfunction."  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4190747/

July  continued with more doctors appointments and finishing my orientation. 

 July 11 Lee met with the neuropsychologist through this appointment we learned that Lee's memory issues were due to medication, metabolic issues and just being sick.  The Neurologist felt that Lee may have a form of early dementia called Lewy Body Dementia.  

"Lewy body dementia (LBD) is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood." https://www.nia.nih.gov/health/what-lewy-body-dementia

Lee also started working with a chiropractor to see if some of his back and Joint pain
 could be resolved.  The place is called the JOINT it is a walk in clinic and you do not
 have to make an appointment.  

https://www.thejoint.com/utah/orem/university-mall-45006

This has helped in his standing up straight and a little with his balance.  July 26th

 was Lees appointment with the ENT Dr. Money  he felt that Lees tornwaldt cyst

 was small enough that is should not be giving him any problems.  Dr. Money did 

set lee up with the audiologist for a hearing test.  This was done on August 9th it 

showed lee dose  have some hearing loss and that he would be a good candidate for

 hearing aids, hey also feel that this could decrease some of his confusion and help 

with some of the balance issues.  Lee is also convinced I have hearing loss from a 

ruptured ear drum several years ago so I will be going to get my hearing tested also. 

To back up just a little on August 4th  Lee went into the ER for increased abdominal 

pain and nausea, at this time his ammonia levels were 95 the normal range for ammonia 

is15-45 so Lee's were way up there the CT also showed a enlarged spleen and of course

 liver inflamation.  They could not find a real cause for the pain besides enlarged organs

causing pressure, the next couple of days were spent taking lactulose and getting the

 ammonia levels under control.  This weekend our AC also went out, luckily we have

 a small window unit that we used in Hurricane that we put in our bedroom

window and huddled in there for a few days to keep cool. 

Lee also got his labs drawn and an updated MELD score was 21.

August 10th Lee went in for a follow up EGD to see if there was a stricture or 
somethingelse happening with his swallow. Dr, Harmston did this procedure along 
with the previous EGD.  He fells lee has a disorder called Achalasia. "Achalasia is a
 rare disorder that makes it difficult for food and liquid to pass into your stomach. Achalasia occurs when nerves in the tube connecting your mouth and stomach (esophagus) become damaged. As a result, the esophagus loses the ability to squeeze food down, and the muscular valve between the esophagus and stomach (lower esophageal sphincter) doesn't fully relax — making it difficult for food to pass into your stomach."

https://www.mayoclinic.org/diseases-conditions/achalasia/symptoms-causes/syc-20352850

I keep thinking why does he have to have all there rare disorders the tornwald cyst is rare and then achalasia.  These are wall things that I have never heard of along with orientation to an ICU my husbands disorders have taught me a ton.  I am hoping to keep up better on this blag and do post in real time now that we are a little more settled maybe I will be able to do that.  

Go Fund Me

For all of you who do not know us well we pride our self in being very self sufficient and really do not ask for help, either physical help or financial help. It was a very hard decision to make to start a Gofundme account.  Here are my reasons why.  We still have a large medical bill from last year when Lee had his surgery, and the complete work up for liver transplant.  This year started off with a bang when the first months medication was $1000 each month and has been that way for the last 3 months we have finally met our deductible and that has been a blessing.  Now that we are getting ready to move paying deposits and first months rent has been a challenge when most of our savings has been spent on medications for the last three months.  You may ask about our insurance yes we have health insurance but there is a large deductible and my HSA does not accrue as fast as I have spent it so it comes from my pocket.  With Lee being sick he can no longer work and as most of you know disability can take years to go through so for now we are in need of a little help to pay off a few bills and help us get moved.  Here is a link to the go fund me account any help would be appreciated.  

https://www.gofundme.com/leesliver

Saying Goodbye to my West 1 Family

Monday April 16th my West 1 family threw a party to say goodbye.  I knew it would be a hard day and I would have a hard time saying bye to many of my co-workers. I worked on West 1 for 14 years and I have met so many wonderful friends.  My life has been forever changed by my experience I have grown as a nurse and as a person.

I want everyone to know how much I appreciate the wonderful party and Thank Des for my wonderful photo album I will always remember the good times we had. We had a wonderful party but it had to come to an end.  I will forever love my West 1 family.

Just a few photos

When we were in Provo we stayed at a motel that was along the Provo river and had a nice walk.

 

Sadie loved walking down by the river and I found this cool tree that had rocks in-bedded in it as it grew.

House Hunting in Provo

We took another trip up to Provo to house hunt.  I spent may hours looking on-line at rentals.  I could find tons of rentals but there are many things that wouldn't work with many of them.  One of the main things we could not get passed was breed restriction of pet restrictions.  Many of you know me and I love my pets like they are my children.  I could not even think of re-homing my sweet and spunky Sadie.  She has been such a blessing in our life, she has become a great companion to Lee when I am away and she has become a snuggle bug to me.  Sadie keeps me up and moving and she keeps us well entertained.   

We finally found a place that will work for our needs, we wanted a 3 bedroom place that had some kind of yard.  We found a town home with a little yard there is no grass but it is a spot for Sadie to go out when Lee is home alone with her.  I know I will get out and walk with her and that will do us both a ton of good.

Lee had a dream about a place that had a green door, a small yard and a couple of stairs, I worried about the stairs but Lee is sure that he will be fine with them.  We were able to sign the lease and our move date is May 1st.