Another call from Donor Connect

Last night while I was at work I got a call from Lee telling me that Donor connect called for him to go to Murray.  Luckily there were nurses on Call that could came take my patients. I ran home and made a quick call to Donor connect and they stated Lee needed to to be in Murray in the waiting room for a possible liver.  We got in the FJ and drove to Murray,  Lee was super anxious and so was I we arrived to the hospital at 8:30 pm and got a call that there was a delay.  At around 10:00 pm we got a call that said the liver was not viable.  The donor was a DCD donation after cardiac death donor.  After withdrawal from life support there is a limited time  that the organs are good if the heart does not stop beating within that time.   "The success of solid organ transplantation has brought about burgeoning waiting lists with insufficient donation rates and substantial waiting list mortality. All countries have strived to expand donor numbers beyond the standard Donation after Brain Death (DBD). This has lead to the utilization of Donation after Cardiac Death (DCD) donors, also frequently referred to as Non-Heart Beating Donors (NHBD). Organs from these donors inevitably sustain warm ischaemic damage which varies in its extent and affects early graft function as well as graft survival. As a consequence, 'non-vital' organs such as renal transplants have increased rapidly from DCD donors but more 'vital' organ transplants such as the liver have lagged behind. However, an increasing proportion of liver transplants are now derived from DCD donors. This article covers this expansion, current results, pitfalls, and steps taken to minimize complications and to improve outcome, and future developments that are likely to occur." Copyright © 2011 European Association for the Study of the Liver. Published by Elsevier B.V. All rights reserved.
Lee and I are getting discouraged this was call number 6 from donor connect.  I know it is getting close but it is getting very discouraging.

Blood Transfusion

Today Lee had labs drawn these are the normal weekly labs that he has drawn every Monday.  Lee had not been feeling that great the last few days but was trying to keep active so we went out with our nephew Dilon to run a couple errands and to grab a burger at In and Out. Just after we ordered a burger we got a phone call from the Liver team.  I was told that Lee had a critical low H&H.  The hematocrit blood test determines the percentage of red blood cells (RBC's) in the blood. Blood is composed mainly of red blood cells and white blood cells suspended in an almost clear fluid called serum. The hematocrit test indicates the percentage of blood by volume that is composed of red blood cells. The condition called "anemia" results from having too few red blood cells.  

We were told to take Lee to the local emergency room to be evaluated after Lee was retested to confirm the results of the earlier labs it was determined that he needed to have 2 Units of red blood cells transfused.  Lee was admitted to the CEU  Clinical Evaluation Unit to receive his transfusion.  Unfortunately they wanted each unit over 4 hours so Lee would be staying over night.  For the first time I was able to stay with Lee all night, having Dilon here he was able to stay with our Sadie girl so I did  not have to worry about her home alone.  I was super tired after a long night of work and very little sleep so I crashed out in the chair I barley heard Lees nurse come in through the night.  His nurse was one of the techs that I worked with in ICU that recently graduated and is now learning the ropes she was awesome and I was thankful for a familiar face.   The next morning we went home and Lee was feeling so much better.  

I told Lee to make a face for his sisters.

Sadie May

On August 9th we celebrated Sadie's adoption day. We adopted her 3 years ago from the Hurricane city animal shelter.  She was a skinny little dog we could count ribs and see her hip bones and she showed signs of being abused.  After we got her home we all had a learning curve and Sadie showed some signs of aggression towards us and other dogs.  She had developed skills that help her cope with her aggression issues and have learned to play easy at first she would bite hard enough to break shin although she was playing.

Over the last few years Sadie has developed into a great dog although she still has a few issues she is loving and loyal, she protects Lee and is a great comfort and companion to him.  She will snuggle up to me at times and loves people.  She has learned to follow commands like Kennel she hated it and talks back but she will go right in where at first it was a battle of wills and she soon learned that I do not give up easy.  Sadie puts up with my antics like head bands and cute sweaters that she actually loves in the winter she is cold blooded and like to sleep under the covers.  I am so happy that I talked Lee into going to the shelter 3 years ago, I just could not leave her there she was so sad and so cute I hated to think what would happen to her if left in the shelter any longer.  

Happy Adoption day to our Sadie may Girl. 

A Break and other things

On Monday August 5th I fell while caring things down the stairs.  I thought at first it was just a bad strain/sprain.  I decided to go into instacare to get it looked at.  After X-rays it was determined that I have a Talus fracture. 

 The instacare doctor sent me home with a boot and asked me to follow up with an orthopedic doctor.

When following up with the orthopedic doctor he confirmed it is a Talus fracture instructed me to wear the boot for 3 weeks and then follow up again.  Dr.Joos also said that I could return to work as long as I felt comfortable and that my boss was ok with me returning.  In 2012 when I broke my leg I wore the boot for 6 months after I returned to work.  I feel like I could work for 12 hours and be ok I may be sore but I will be ok.

 

Lee has a follow up at the liver clinic on August 7th Lee's labs showed he is dehydrated, he also has renal insufficiency. The plan going forward is encourage fluids and go to IV therapy and have 1 liter of fluids infused.  Lee will have weekly labs until his kidney function is better. Lee's current MELD score is a 23 but the previous was a 24 that score will be good for a month so it will stay there for a couple more weeks.

Lee also has an appointment for a new c-pap mask there are a ton of different options for masks out there.  They tried a few different masks for Lee and one that finally fit him perfectly.

Next up just weekly labs. I will update Meld score as I know them.  Lee needs lots of prayers for a liver his MELD is where he should be getting offers.

Fundraiser/Awareness bracelets

After much debate and looking at a lot of different options Lee and I decided to order fundraiser/Awareness bracelets.  I have really been wanting to promote organ donation and have not really found a good platform to do that.  I really wanted to do something besides this blog.  I just wish I had more ideas I am open to any suggestions.

Fundraising will help us pay for medical bills that have been piling up over the last couple years.  

Lee, Sadie and I rocking our Lee's Liver bracelets we would love to see how you are rocking your bracelets too.  

Please let me know if you would like one 1$ each or whatever you would like to donate.  I am willing to ship them to you.  

Jimmie's Sleep study

Along with all of Lee's medical issues I have become fatigued.  I complained to my doctor telling her I just always felt tired.  I did an over night pulse ox study and they felt that I needed a sleep study. I did my sleep study and it went well they explained it I had to many apnea episodes that they would come in and place a cpap,  I slept through the night and they did not come in and place a c-pap so I take that as I do not need one.  The tech said the doctors will look at all the information and let me know the results.  I sure hope I do not need a cpap but if it will make me feel better it would be worth it.  I was shocked at all the pre and leads that needed to be placed.  There were 2 leads on each leg, two cardiac leads, two bands that went around my rib cage, a nasal cannula that monitored my nose or mouth breathing, leads on my face and neck to monitor for teeth grinding, and multiple on my head to monitor REM cycle and brain activity.  I felt like I would could get cable TV with those wires.  I looked really pretty too.

When the tech came in that morning I did not feel like I had slept much but lights out was at 10 pm and the tech came in at 6 am I remember being awake for a while in the night.  The morning came and it was time to take all the wires off.  everywhere there was a lead I had a big red area I am allergic to most tape but it was necessary for the test.  I did not take a picture of the red areas but they were tender for a couple of days.  I am still waiting for the official report.  I will update when I know more.

Just a few happenings

New glasses:  If you have followed our blog you will know that Lee has surgery on both of his eyes over the last 4 months or so.  The time had finally come to get new glasses.  The cataract surgery have healed up nicely and with the surgeries Lee's  distance vision was corrected he says its like looking through binoculars out to the mountains, but his reading and close up vision he still needs glasses.  We went to Lenscrafters and started looking at new frames I kept handing him frames that I likes and he kept shaking his head that he did not like them.  So I stepped back and just let him look and make the decision on his own.  I think he picked a great pair it is something I never would have handed him but they fit his face nice and look good and the best part he loves them.

Most of my life I have had long hair, as I have gotten older I have cut it shorter and shorter it grows out and I will eventually cut it again.  Being summer I have just roasted the last couple months I know being from Southern Utah the 14 years it should not be that bad in Provo but it is.  We live close to the Provo river so that puts our humidity index above what I am use to and we are at a higher altitude so when it is hot it feels even hotter then it is.  Anyways I recently cut my hair shirt again ignore my red face I seem to remember to get picture after I have been out walking with Sadie so yes it is hot and I have a red face.

All of Lee's life his mom or sisters have made fudge, I never had the patients to learn although I watched Georgetta make it hundreds of times and even made it with her there guiding me I never tried it all on my own.  Now Lee had been pestering me to make him fudge.  I know I should have learned this skill long ago knowing how much he loved it but I always felt it was something special that his mom did that I did not want to interfere with.  Now that mom is no longer with us it is time to bite the bullet and learn to make fudge.  I know the basics and have the ingredients so I gave it a shot ( sorry Jesse I didn't call it was like 11 pm) it turned out tasting good it just did not set up very good I think I under-cooked it.   I know it is a skill that will take time and patients to learn and I will get it someday. I am sure Lee will enjoy the errors at least some of them like he did this one. 

This June I celebrated my 15 years working for Intermountain Healthcare.  I started as a brand new nurse on a surgical unit at Dixie Regional Medical Center back in 2004.  I worked and watched as the unit changed and  grow into a Surgical-Trauma Unit.  Dixie Regional grew into a level II trauma center and I enjoyed working with the trauma patients.  If you have tracked our story you know we made the decision to move closer to Intermountain medical center in Murray where Lee's transplant team is located and where  he will be having a liver transplant.  We chose Provo for several reasons, we felt like it was a good central hub, family close withing a few hours in several directions, we did not want to live anywhere in the Salt Lake Valley for many reasons, and we had talked about moving to Provo for several years and every time we really thought about moving there were no jobs posted.  I think the lord knew we really were serious and needed to move because the job that I really wanted open up and after one phone interview and a meet and great with the boss the job was mine.  I started working at Utah Valley Medical center in May of 2018 on the Neuro Shock Trauma ICU.  I know that I would miss my Dixie friends but was excited to learn and grow as a nurse.  I am thankful for my Boss Curt he has been so awesome to work with me and asks about Lee and how he is doing, I feel like this is the boss I needed through this stage of my life where I need support from not only our family and friends but from my boss and work family too.  

Every 5 years of employment we receive a anniversary gift and packet,  This year I had a really hard time deciding what to pick.  in the past I usually picked jewelry but I just wasn't feeling it this year so I picked a Cuisinart Air Fryer. I am excited to get it and start using it I will see how things turn out with it.