Ringing in the New Year

Christmas has come and gone and the New Year is fast approaching with that I wanted to send an update on the happening over the last week or so. 
12-26  the doctor that was placing the stent in Lees esopogus called and canceled the procedure, we have yet to find out exactly why because he went on vacation, this has been a frustration to Lee and I along with his liver team.  Apparently there was no documentation as to why it was cancelled.
12-27 Lee had a follow up appointment with the liver team, there were a couple of changes to his medications and a change to his tube feed formula.  Apparently his kidneys are unhappy with the medications and the tube feed.  Lee only has one kidney to start with as the other has atrophied they estimate as a child due to some injury.  With playing football and Rodeo there are two things that may be to blame. 
12-28 we got Lee in for a paracentesis where they removed 5 liters of fluid from his abdomen. The liver team also wanted him to have 1 liter of albumin so we went over to the IV therapy department for that to be done.I received a call later that evening from the Liver team stating that there was an elevated white count that indicated an infection.  I got the message late while I was at work so I went on Saturday to pick up the antibiotic.  Our usual pharmacy was closed so I had to call the liver team on-call line and have the prescription sent to Walgreens well let me tell you it was so busy I guess everyone filling their prescriptions before the end of the year and having new deductibles.  He started his antibiotics and on Sunday morning woke up with increased confusion, he did not have a fever but he felt like his skin was on fire and he had developed a rash on his hands and arms.  I called the liver team back and they wanted me to take Lee to the Emergency room in Murray from there he was admitted to the transplant floor for further workup.  Lee has been diagnosed with Sepsis and SBP.
*Sepsis is a potentially life-threatening condition caused by the body's response to an infection. The body normally releases chemicals into the bloodstream to fight an infection. Sepsis occurs when the body's response to these chemicals is out of balance, triggering changes that can damage multiple organ systems. This morning they took Lee down for a paracentesis and drained 4400 ml of fluid off of his abdomen they wanted to run further labs on this fluid to see if there were any changes and to check what antibiotics he is susceptible to. 
https://www.mayoclinic.org/diseases-conditions/sepsis/symptoms-causes/syc-20351214
Spontaneous bacterial peritonitis (SBP) is defined as an ascitic fluid infection without an evident intra-abdominal surgically treatable source. The presence of SBP, which almost always occurs in patients with cirrhosis and ascites, is suspected because of suggestive signs and symptoms, such as fever, abdominal pain, or altered mental status.
https://www.uptodate.com/contents/spontaneous-bacterial-peritonitis-in-adults-diagnosis
Lee is currently on Antibiotics and IV fluids they just restarted his tube feeding and his home medications. He is still quite confused and has full body tremors  these symptoms should clear up as the sepsis clears up.  Lees room has a good view of the hele pad and the mountains so at least there is one positive not.  The weather Sunday night was not the best and the drive home was a little scary but it is like riding a bike you remember what to do when the roads are slick even if you haven't driven in the snow for a while. 

Replacing the feeding tube and a couple of other things

12/20 we drove to Murray for another attempt at placing a new NG tube.  I was super worried both days because placing the NG tube in September was the main aspiration issue that cause Lee to code and have a long hospital stay. I voiced my concerns to the NP, after 5 guide wires and about 45 minuites of trying to manipulate the feeding tube it finally was in place.  The nurse practitioner had me come back and showed me the placement of the tube.  He also talked to me for a while about the change in practice that the whole department went through in October.  Lee was what they call a sentinel event: A sentinel event is defined by American healthcare accreditation organization The Joint Commission (TJC) as any unanticipated event in a healthcare setting resulting in death or serious physical or psychological injury to a patient or patients, not related to the natural course of the patient's illness. Lee aspirated contrast into his lungs that made him not able to get air into his lungs on his own, this is the reason he needed to be on a ventilator for so long.  Due to this event the change of practice came about, they have changed the type of contrast that is used they changed from Gastrogrfin  to isovue contrast,  the contrast cannot be instilled until the practitioner has the tube into the stomach,  if it is not in the stomach and the contrast is instilled it must be removed with the syringe until the contrast can no longer be seen on the X-ray.  It made me feel better that through Lee's struggle and event something was done to protect future patients.  it always makes me feel better that although Lee was harmed someone else life can be saved.  Lee was lucky this event could have taken his life but with fast action on mine and the code teams action he is alive, I am just so happy that I was at the bedside waiting for him to return.This is the type of feeding tube that was placed. This feeding tube is inserted in Lees nose goes through his esophagus through the stomach and ends in his small bowel. 

Lee's feeding tube had been causing him discomfort for a while now he was to the point that he could not stand it any longer.  We tried many things to help including cloroceptic spray, cepacol lozenges and lidocaine ointment for the inside of his nose. We kept his nose moist with saline spray and saline gel but nothing was helping.  The feeding tube that was in was not made of a soft silicone but a plastic that had hardened.
 12/19 we went into interventional radiology at Utah Valley hospital,  after about a half hour and multiple tries the nurse practitioner was not able to place the tube, we also learned that the current feeding tube was only about 2 inches into his stomach.  This is a risk for aspiration.


12/21 I called the liver team to see if they could get Lee in for a paracentesis before or after his scheduled MRI they found a spot for him in Riverton Utah.  This was a new adventure for us we have not been to this hospital before.  The team here was awesome to fit him in last minute.  They did a great job getting him in and cares for well.  They removed 5050 ML of fluid from his abdomen.  He also needed to have 2 bottles of albumin the nurse was awesome to bet it in as fast as she could to get us on our way to Murray for Lee's scheduled MRI.  We took off a little late but they were awesome to stay and gets Lee's MRI done even though we were an hour late.  It has been a whirlwind of three days.  This seems to be how our weeks go I work and run Lee here and there for this or that.  

Since the last post until now

Lee has been home for more then a month now and every week we are off to another appointment or procedure to help him on his road to recovery.
November 13th:  The liver team wanted to try Botox treatment once more to see if this will help resolve the achalasia.  This procedure was done by Dr. Boshard he is the lead doctor when it comes to botox treatments.  He had high hopes that the last treatment was impeded by the food remnants in Lees esophagus at the time of the treatment.
November 15th:  Lee had a paracentesis, this is to remove the excess fluid in his abdomen called ascites. Lee has had an issue with this since his hospital stay in September.

Ascites happens when pressure builds up in the veins of your liver and it doesn’t work as it should. These two problems usually are caused by another condition -- cirrhosis, heart or kidney failure, cancer, or an infection.
The pressure blocks blood flow in the liver, which over time keeps your kidneys from removing excess salt from your body. This, in turn, causes fluid to build up.

At this appointment they removed 5 liters of fluid off of his abdomen. Each liter of fluid weighs 1 kilogram which is 2,2 pounds.  Lee had 11 pounds of fluid removed from his abdomen this day. 

On November the 18th Lee was not feeling well at all and he could not keep his footing so I took him to the instacare, they took one look at his history and sent him straight to the ER.  after several test it was determined that Lee had a UTI. 

November 20th Paracentesis removal of 2 liters of fluids which is 4.4 pounds of fluid.

November 21st Lee had low blood counts on his previous labs.  Hemoglobin of 6.8 and Hematocrit of 23.5.  Lee went into IV therapy and received 2 units of blood.  While sitting there waiting Bonnie and Randy came by on their way to Duchesne for thanksgiving weekend.

November 26th Lee and I had to go into Murray for a gastric empty study,  this was to determine if the botox treatment was successful, which we learned that it also failed.

November 28th Lee had a CT of his head his confusion has just never really cleared and he had fallen a couple of times once hitting his head.  This was mainly to be safe.  Lee also had another paracentesis this day mainly to test for infection. this was less fluid then normal 1800 ml.

November 29th:  for the transplant list there are multiple test that Lee has to do each year. one of the test is a cardiac stress test to ensure his heart remains health.

A cardiac stress test (also referred to as a cardiac diagnostic test, cardiopulmonary exercise test, or abbreviated CPX test) is a cardiological test that measures the heart's ability to respond to external stress in a controlled clinical environment. The stress response is induced by exercise or by intravenous pharmacological stimulation.

Lee stress teat was perfect according to the Nurse Practitioner in the liver clinic. 

November 30th:  Appointment with the liver team, this was a good and bad visit Lee is doing better there was a couple of medication changes and we got results from the test.  Because of the failed botox Lee was placed into Section 7 on the transplant list which essentially means  he is on hold and will not get any Liver offers.

On December 3rd Lee had a fall hitting his back pretty hard leaving some large bruises.  I took him to the ER I always worry with his liver failure and chronic anti coagulation problems.  Everything checked out fine, Lee is just really really sore.  

December 6th Lee had another fall in the bathroom.  He did not want to go to the ER, on December 8th Lee had a ton of pain and was not even able to get out of bed very well, I took him to the ER once again he has 2 broken displaced ribs and a compression fracture of the t-10 vertebra. 

midwestbonejoint.com

Spinal compression fractures are also called vertebralcompression fractures (VCF). This type of spinal fracturecan cause severe back pain and adversely affect your overall health. A VCF occurs when one or more of your spine's bones—the vertebrae or vertebral bodies—fractures causing spinalbone to compress.Oct 9, 2018

What is a Spinal Compression Fracture - SpineUniverse

https://www.spineuniverse.com/.../spinal-fractures/what-spinal-compression-fracture

Lee did not need surgery and there was a debate on weather or not to admit him for pain control.  Lee decided to go home after they decided to let him choose.  Lee had been recovering and we have been trying new things to help him get stronger.  He is continuing working with PT and OT, we have also purchased a pass to the Provo Rec center so that Lee can walk in the pool and enjoy the hot tub and as he gets stronger he can use some of the other facilities.  

December 10th Lee had a parcentesis.  5 liters of fluid was removed that is 11 pounds of fluid accumulated in his abdomen.

December 17th once again another paracentesis this time 4.8 liters of fluid removed. which is just under 11 pounds.  

There are many appointments and procedures to come.

Tomorrow Lee is going to have his feeding tube replaced the current one has been in there for a while and has gotten stiff it is causing a very sore throat and his nose to bleed often.  

Friday Dec 21 Lee is going to Murray for an MRI of the liver, his liver cancer markers was elevated so he needs an MRI just to clear his liver.  

December 26th Lee will get a stent placed in his lower esophageal sphincter.  This is to help with his achalasia, this is to help prevent any further aspiration.  

Sorry for all the late post

I have been super busy with Lee, and getting back to work.  I don't know how many people are following all of Lee's adventures but this helps me to keep track of his ups and downs and one day after he is well again it can be printed to be a journal of his journey.  I make no promises to keep it up to date but I will eventually update as I can.  Thank you all for following. 

Roller coaster ride after going home

Lee was doing so well at home, working with home health, doing the stairs well and just enjoying life at home until one day he was just so miserable he could not take it anymore.  On October 22nd we brought Lee to the ER here in Murray, they did a paracentesis and drained 2700 off of his belly and did some cultures.  The following day we were in the liver clinic and that is when we found out that Lee had a viral infection and that is why he was feeling so poorly.  On October the 26th Lee went in for another paracentesis and they drained 4100 ml of fluid off of his belly.  Later that night Lee began to throw up blood, so back to the ER we went this time he was admitted to Utah Valley hospital.  On October the 27th he went to endoscopy and they found he had a Malory-Weiss tear.

While they were looking for the bleed they dislodged his feeding tube,  they were able to replace the tube but once again had to suture it to the bowel.  During his stay he took a shower and flooded the shower room which is across from his room, so he flooded his room also. He did well and toward the end of his stay began to have tremors we all thought it was from the morphine he had received for a couple of days.  Lee cane home on Halloween day. Although we enjoyed the trick-or-treaters, they made Sadie have a bad day.
October 3rd was just a bad day in general Lee's tremors were severe and his confusion was out of control.  He had not slept the entire night and was up and down about every 15 minuets.  This ran Linda ragged because I was at work and she was on night duty with Lee.  I slept some of the day and then made the choice to bring Lee back to the ER at Utah Valley hospital.  He was admitted for suspected infection and encephalopothy. While he was in the hospital he was not improving at all,  he was admitted on Saturday November the 3rd and on Monday the 5th we convinced them to transfer him to Murray to be admitted to the liver team.  They did another Paracentesis and ran a bunch of cultures of their own, the final verdict was sever dehydration and infection.  After 12 hours of fluids Lee is more himself,  still a little confused and some slight tremors but doing so much better.  Today Linda and I were brave and rode the front-runner train it was actually really nice to be able to just sit and relax on our ride to the hospital.

The Plan from here is to send Lee home in the morning, his hydration level is improving and he is currently sleeping.  I just have to tell you about a few things he did when he was so out of it, first the ugly, he was not very nice and it was usually directed to me.  I love him and I know it was not him truly just the illness and encephalopothy.  While in Provo he had a taped on Pulse ox monitor he kept asking the nurse for a pair of pliers to "get this damn thing off my finger" then he ripped it apart trying to get it off.  Another time when he returned from a paracentesis he told the staff "they used a hammer and screwdriver to get the fluid out."  Once we got him here to Murray his nurse said " I need to see your IV" Lee looked at her and said "ain't I Ivie enough" Linda and I were sitting on the couch laughing at him what a silly man.  At one point I reached over and touched his arm Lee grabbed my hand and shoved it away and said "Sadie has a cold butt".  Then a few minutes later I was sitting talking to him, he looked at me crinkled his nose and said "you have snake breath" I don't know what snake breath smells like but I didn't think I had bad breath.   He also tried to tell the doctor that his name was Jimmie and I was Lee and that I was the one that was sick not him.  Today he was laying in bed as I was updating this blog and he said Jimmie help I looked over and he had his SCD cord stuck between his toes.  It is always something.

Rehab at Utah Valley Neuro-Rehab unit

September 25th was moving day.  Lee was super excited to be closer to home and to start his road to recovery. The criteria for Neuro-rehab was 3 hours of rehab/therapies a day this was this was for PT/OT with an additional hour for speech therapy.  For someone that spent 2 weeks in the ICU this was a big challenge. The first night at rehab Lee was able to video chat with his mom Donna was there and added a few filters it made Lee laugh, at this point he needed a good laugh.

Lee Did so good in therapy, he worked hard each day and got stronger and stronger, he had some ups and downs needing several more paracentesis while he was there.  All in all Lee was a rock star. He did have his silly moments, One day he was convinced his feeding tube was his head band and kept putting it on his head.

Lee also had several adventures outside,just a little walk to look at the life-flight chopper, a couple of adventures to see his Sadie girl and several trips to sip-in for flavored ice cubes.

 Lee received a new Picc line while in rehab they had such a hard time trying to get labs and IV in him.  It drove him crazy flopping around so I found him some cool arm covers.

Bonnie, Ivy and Mattie came to see Lee one day, he enjoyed seeing they all and seeing Ivy's newest baby also.

Lee was discharged from Rehab on October 18th.  He was doing super well with therapy and was tolerating the tube feeds.  Linda Lee's sister made the trip from her home in Saint Johns Arizona to help me with Lee for a little while.  I am forever thankful that she has been here with me to take over care when I have to work.  Sadie has been Super happy to have Lee home too.

Many Many complications

I started writing this post in September and I never picked up the computer to finish it, better late then never.
Saturday September 8th.  Lee had many visitors in his ICU room, Joetta came down on Friday night to stay the weekend and hardly left his side, Bonnie can Saturday to and sat with him through the night. Donna and Jessie brought Lee's mom down for a visit and Dee and Jeri came to See him too.  Lee remained intubated because he could not protect his airway and breathe on his own.
Sunday September  9th. Joetta and Bonnie had to go home today.   Jessie came and sat with me through the day, I was so glad to have someone to talk to and not be alone, we did have a great slice of pizza in the cafeteria it has some yummy vegies it was a Ratatouille pizza.  The Gastroenterologest came in and attempted to place a small bowel feeding tube (SBFT) assisted by the EGD scope. this was not successful the tube did not want to stay in place.  The debate on this day was attempt again placing the SBFT  with the scope, going to interventionial radiology for tube placement or placing a PEG or PEJ tube.  The PEG/PEJ was ruled out due to the high risk for infection with his liver failure and ascities.  They made a plan to attempt placement with the scope on Monday.
Monday September 10th: The Gastroenterology came in and placed the SBFT via scope, this was not an easy task they had to place 5 clips and a suture to keep the tube in place and to keep it from migration out of the small bowel.  After the SBFT was placed the nurse started to wean the sedation, there was not a change in mental status with the sedation removal, Lee just did not want to wake up  when speaking with the doctors they feel it is due to his encepalopothy  Lee went several days without any of his liver medications and this caused the encepalopothy to be worse he was in a coma state at this point. September 13th Kayleen and Wyatt cane down to see visit, Wyatt stayed the night with his Uncle Dude Dude.  September 14th Joetta came back with Kayleen and sat for the day.  This was a good day for Lee they finally did a paracentesis and drained 6800 ml from his abdomen.  We all went over to have lunch at noodle and company. When we arrived back to Lee's bedside he was a little more responsive and would only really respond to his Baby Bo. We did giggle a little about to pretty bow that was on his head holding the breathing tube in place.

After this Lee got better and better.  On September the 16th Lee was finally awake and trying to communicate,  he was able to get his feeding tube out and he was so happy.  What a day to remember and to celebrate.  Things can only get better from here.
September 17th Lee got up in the chair for the first time in two weeks,  he was very weak and needed a ton of help he was so happy to get out of that bed, I can only imagine after two weeks in bed.  Don't that look like a happy face.

Funny thing in Lee's ICU room this was the view from the window,  we joked about this "no wonder Lee's not waking up".

         
I was so worn out from all the previous days that I finally took a nap one day while Lee was taking a nap, I fell asleep holding his hand through the bed rail and an hour later I woke up still holding that hand.

September the 21st was moving day Lee graduated from ICU life to life in the outside,  he was moved back to the transplant floor and to my horror they pushed him right into the same room that he coded in.  I was not comforted by this at all, the only plus was it is across from the nursing station.  On September the 23rd Lee and I took a walk outside and sat by the water feature it was a nice day and Lee was having a good day.

September 25th 3 week exactly Lee was able to leave the hospital and got to Utah Valley hospital for in-patient rehab.  Lee and I are very thankful for all the care he received at IMC from the shock/trauma ICU and T-10 the transplant floor, you will never really know how much I appreciate you all.

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.