Eye surgery struggle

On April 8th Lee had an appointment with the ocular surgeon ,  Lee was approved for surgery he was super excited.  Lee has struggled with seeing for the last several months and it has taken a toll on his mental health.  On Friday April 12th Lee had a follow up with the liver team.  We found out that they are not wanting to reactivate his listing yet.  The liver team wants him to follow up with the neurologist to make sure that the swallowing issue does not have a neurological aspect to it. I know that they are super worried about Lee aspirating again although the two times that Lee aspirated was while procedures were occurring.    The liver team also did NOT want Lee to have eye surgery.  This made Lee super upset neither one of us could understand.  The ocular surgeon felt extremely comfortable do surgery and that there is a very little risk of surgery.  With it being later on a Friday I didn't feel like there was much we could do.  On Monday morning I called the eye surgeon and asked him to call Dr. Gilroy with the liver team.  I finally heard back on Thursday that the decision was made that Lee could have his eye surgery.

Lee will have his eye surgery on April 23rd.  Lee is so excited.  Lee also has an appointment to have his denture realignment so that he can eat a little more he is looking forward to eating a steak.

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.