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.