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!
Prep Time 10 minutes
Cook Time 20 minutes
Total Time 30 minutes
Servings 6
Calories 357 kcal
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
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In a large pot, melt butter and saute chopped onion until soft.
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Add cauliflower florets, chopped potatoes, garlic powder, black pepper, salt, and chicken broth.
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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.
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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.
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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.
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