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 Blood for laboratory tests can also be withdrawn from a PICC.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.