Febuary and March updates

Luckily February was fairly uneventful. At Lees appointment on January 31st everything was good Lee got permission to take all of his medications by mouth so they would not cause him to have so much stomach pain instead of going through the feeding tube.  For some reason they always made him dry heave through the tube and this had been super miserable for him.

There is also a plan in place to dilate Lees esophagus in the near future.  Paracentesis on 2-6 5900 ML of fluid was removed.  2-11 Paracentesis with 5000 ML removed.  

Febuary 12th Lee needed to have blood once again  this was done in the Utah Valley out patient Infusion therapy  Lee just loves that I take his picture so often.

At least he doesn't hide his face.  Sadie also thinks I take to many picture.  She was sitting with Lee so cute after we got home.

Lee spiked a fever and was feeling really bad on 2-13 the Liver team wanted him to have another paracentesis to check for bacteria,  This paracentesis only removed 1900 ML out.  

On 2-15 Lee had an appointment with Dr. Pisani who preformed his Tips procedure.  After an ultrasound was done the doctor was really happy with how everything looks and is working.  Lee also had a paracentesis on 2-20 and 2-26 each time removing 3-5 liters of fluid.  on 2-20 Lee also had an esophogram it showed that Lee still have some eesophogeal emptying issues.  On 2-26 Lee had another unit of PRBCs.  

Througout the rest of the month of Febuary Lee continues to get much better after he started eating small amounts of Puree foods, he liked mashed potatos, pudding, Jello, soups and especially my Cauliflower soup.  I received this recipe from my friend Sara who has a food blog.  https://eatdessertsnack.com

Cheesy Potato Cauliflower Soup

Cheesy Potato Cauliflower soup can be make stove top, slow cooker, or in an instant pot. It's a great fall and winter family recipe that's quick and easy!

Course Main Course

Cuisine American

Keyword 30 minute dinner, Cauliflower Potato Soup, Slow Cooker

Prep Time 10 minutes

Cook Time 20 minutes

Total Time 30 minutes

Servings 6

Calories 357 kcal

Author Sara

Ingredients

• ¼ cup 1/2 stick butter
• 1 medium onion chopped
• 1 head cauliflower cut into small florets
• 4-5 medium potatoes peeled and cut into 1 inch pieces about 4 cups
• 1 Tablespoon garlic powder
• ½ teaspoon black pepper
• 1-2 teaspoons salt, to taste
• 3 cups chicken broth
• 1 cup shredded cheddar cheese
• 4 oz. cream cheese
• 1-1/2 cups milk

Instructions

1. In a large pot, melt butter and saute chopped onion until soft.
2. Add cauliflower florets, chopped potatoes, garlic powder, black pepper, salt, and chicken broth.
3. Simmer on medium heat for 20 minutes, until potatoes and cauliflower are tender. If making in a slow cooker, cook on high for 4-5 hours. 
4. Remove from heat and use immersion blender or potato masher and blend until mostly smooth, I like a few chunks left. You can also spoon into a heat compatible blender and blend until smooth. 
5. Stir in cheddar cheese and cream cheese until melted. Stir in milk last. Add more salt if needed to taste.
   

   
   

March came in with another appointment with the liver team, all is the same nothing has changed we did get Lee scheduled for his EDG with dilation on 3-19.  The first week of march Lee has struggled with some encephalopathy issues.  I finally got his settled down with the help of his Sadie girl.

March 12 I took Lee to the eye doctor come to find out the high dose of steroids can cause cataracts.  Back in September while Lee was intubated he was given high doses of steroids to help his Lungs heal after he aspirated contrast.  He has a follow up appointment with on ocular surgeon to see if he is a canadate for cataract surgery, with his liver failure he is at high risk for bleeding so sometimes things like this will not be approved we will just have to wait and see with the next appointment.  3-14 Lee had another ultrasound of his liver and lower esophagus before his dilation the following week.  3-19  The day has finally come that Lee was able to have his esophagus dilated.  Everything was successful.  The dilation was perfect there was no leaking and the contrast moved into his stomach in a timely manor.  The ulcer that was there in January was healed and gone Lee could not be happier, he is ready to eat an elephant, although he has to  stick to soft foods at this time. 

 3-20 While the test were being done to look at Lees esophagus it was noted that his PICC line was once again in his internal jugular.  An appointment was made at American Fork hospital to have it looked at and readjusted.  They were able to power flush it and reposition it.  

On 3-21 I took our car in to the shop to get fixed it broke down before Lee got sick in September so it was a long time coming I an so happy to have my car done it makes me happy because it was my moms car that I got right before she passes away. So there are a lot of memories that are attached with that car.  Lee also had a appointment with the dermatologist  he has been super itchy the last little while, he also had a mole that was painful on his back so he was told that in general liver failure patients just itch it is the toxins leaching out through his skin.  He was given some cream to rub on and a medication that the liver team said he could take only if it did not affect his encephalopathy which it did so he had to stop taking it at this point.  Lee has been doing super well with eating he ids trying to stick with eating soft foods but at times a hamburger calls his name. My sister Cathy and her husband cane for a visit on 3-28 and on the 29th (my birthday) we took Lee for his final swallow study that showed good emptying into the stomach.  We went to Lehi mill to get Ed some bread flour and to Ikea jut to look around it was a fun day.

 These picture are from a few years ago it was the first time we had ever went to the mill that was a fun adventure too.  We always find something fun to do when my sister comes to visit  These are some of my favorite pictures Lee didn't think I was that funny even before he was sick.

 Cathy and Ed stayed through the weekend we ate at Red robin for my birthday dinner.  The next day we adventures to Uncle Sam's military surplus store and to Target to get some treats that they cannot get back home.
That night we went out to the movies to complete my birthday celebration We went to see Dumbo I totally enjoyed the Movie.  Lee seemed to enjoy himself also.

Lee did not need a paracentesis the entire month of March his last one was on 2-26, the liver team was able to restart his diuretics and his kidney function has been stable. His blood levels have also been stable so no more blood transfusion since 2-26 .  We are hopeful that everything is now settling in and will remain stable. We hope April will bring great things we look forward to Lees follow up with the eye surgeon and getting put back on the transplant list.  We hope Lee will continue to improve and life will get better and better.  Lee is still working with PT, OT and speech therapy at home and getting stronger every day.   

More ups and downs

1-28 Lees mom, and sisters Joetta and Kayleen came out for a visit, it was great to see them and it does cheer Lee up quite a bit.  we just hung out at the house until it was time for Lees appointment for his paracentesis.  They tagged along to see the new hospital tower.  Lees paracentesis went well and he was the first one done in the new ultrasound suite.  It is a very nice area of the new tower although Lee said the other bed was more comfortable.  They were able to remove 5900 ML from his abdomen so he was feeling tons better after it was done.  I wish I would have gotten pictures but I totally didn't think about it.  Here is an image of the outside of the new tower.
1-29 Lee had the appointment for the balloon dilation of the esophagus, when they first were doing the initial visual exam of the esophagus they found an ulcer. This made it to dangerous to proceed with the balloon dilation, Dr. Boshart ordered a CT of the esophagus so we went from ENDO to the CT area to wait Lee did so awesome he walked into the building and then to the CT  we then sat and waited for Lees feeding tube to be replaced.  This was a couple hour wait.  We did talk to some very interesting people in the waiting area.  Lee was not happy at all with having to get a new feeding tube but he will do what it takes to get a transplant.  We finally made it home at 5:00 PM  after leaving the house at 6:00 Am it was a very long day.
1-30 I received a phone call from the liver team telling me that Lees PICC line was coiled in his internal jugular, it should end in the superior vena cava above the heart.  Lee has an appointment tomorrow to have it repositioned, and an office visit we will learn what the next steps are to get his swallow better.  hat a busy Week I feel like it will never slow down. 

TIPS procedure and one more night at the hospital

1-15  Lee needed to get a PICC line before his Tips procedure.  He was able to tolerate that well. 
A peripherally inserted central catheter or “PICC” is a thin, soft, flexible tube — an intravenous (IV) line. Treatments, such as IV medications, can be given though a PICC. Blood for laboratory tests can also be withdrawn from a PICC.

Lee had struggled for a little while with IV sticks and blood draws it was decided that a PICC line would be good for him because of the weekly labs and paracentesis that requires an albumin infusion.  While Lee was in the hospital last he had an IV go bad while they were infusing blood this is the result.

1-16 Lee was scheduled for his TIPS procedure We arrived at 10:30 and Lee was taken in to his procedure  I was warned that it would take several hours but 4 hours into the procedure I of course became worried.  Just about that time the doctor arrived and told  me everything went perfectly.  They also did a paracentesis where they removed 7 liters of fluid off of Lees abdomen.  I think that is the most fluid he has ever had removed.  With the TIPS procedure he should have a decrease in the ascities that develops, but it could also cause an increase in the encepholopothy.  Lee was then admitted to the Transplant floor for just an over night stay.  Lee did super well with the procedure and recovery.  Lee was super happy to be home and on the road to recovery.

Later that night Lee had a fall and hit his head,  he started to complaining about numbness to his face so I took him into the ER to have his head checked out.  Come to find out he really has a brain and there is no damage.  Just kidding  he was ok there were no bleeds and no other damage.  He was sent home and had a good nights sleep.  Since the fall and the over night stay Lee has been  working with PT and OT and getting stronger every day.

1-18 Lee had an appointment for a blood transfusion he had 2 units of blood at Utah Valley Hospital.  He was happy they gave him a room with a bed and he was able to take a nap for a couple of hours.

1-24 Lee had an appointment with Doctor Boshard to talk about the balloon dilation.  There are many risk to Lee during this procedure, including the risk of rupturing the esophagus that will require emergency surgery the risk of bleeding and the risk that it will not work and Lee will have to keep the feeding tube longer.  After talking about all the risks and benefits we decided to go forward with the procedure.  Here is why  if the achalasia is not treated Lee has too high of a risk of aspiration to go forward with the liver transplant so essentially he would be removed from the transplant list and would be medically managed with a mortality rate of 5 years with medical management. If he goes forward with the balloon dilation and there are severe complications it could essentially end his life but that is in extreme cases. We both feel that there is a acceptable rate of risk and this is a lower risk than being removed from the transplant list.  The Balloon dilation has been scheduled for Tuesday 1-29 so keep him in your prayers and I will update when I can.

All the happenings while Lee was in the hospital

1-4 this was a big day for Lee the doctors decided that he was ready for the stent to be placed in his esophagus. The procedure went well and Lee was able to have the feeding tube out.  He actually got to drink and eat some pudding.

1-6  on Lees morning chest x-ray it showed that the stent had moved into his stomach, he was taken back to endoscopy to have it adjusted. 

1-7 the stent once again moved into his stomach over night so the plan is to remove the stent and replace the feeding tube.  this will happen on 1-8.

With the stent failing it is time to figure something out to fix Lees achalasia. There are two invasive procedures that are the treatment for it. 

First there is the Heller myotomy.

The Heller myotomy is a  laparoscopic (minimally invasive) surgical procedure used to treat achalasia. Achalasia is a disorder of the esophagus that makes it hard for foods and liquids to pass into the stomach.
The Heller myotomy is essentially an esophagomyotomy, the cutting the esophageal sphincter muscle, performed laparoscopically.



This surgery comes with risk to Lee with his liver failure it increase the risks to be a high risk surgery.  There are so many factors that can make the surgery high risk the risk for infection is higher due to the ascities, risk of not tolerating anesthesia, and just general risks of making the liver failure worse.
The second invasive procedure is a balloon dilation.

The balloon dilation also comes with risk.  There is a risk of rupturing the esophagus and the risk of bleeding.

There are risks with both procedures but the liver team has decided that the balloon dilation has the less risks.  There are a couple of things that will be done to decrease the risk before the balloon dilation. The team will set Lee up to have a TIPS procedure and have the varices in his esophagus embolized. 
TIPS is a non-surgical method of placing a portosystemic shunt. The shunt is passed down the jugular vein from the neck by a radiologist using X-ray guidance. The shunt then is inserted between the portal and hepatic veins within the liver.


1-10 Lee was discharged from the hospital and was so happy to be going home. 

On the way home we were at a stand still on the interstate,  it took a couple hours to get home.  Lee had a good nap. There was a accident that had traffic shut down to a stand still.

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.