The 8th and final call for a liver

Lee has finally gotten a call for a liver.  For real and true this time. It is a Sunday night and I am at work Lee is home alone when he received the call This time he was able to get hold of me sooner then later, my awesome co-workers sent me out the door as soon as I was done charting and I headed home to pick Lee up and head to Murray Utah where he would be getting his transplant. We arrived at 9:30 PM with an expected OR time of 2 a.m., this time was changed multiple times to 5 a.m. 10:30 a.m 12 p.m. ,2 pm, 5 pm, 6:30 p.m then finally 7:30 p.m. He finally went on the 8th scheduled OR time.  While the team was going over the surgery with us they explained it could take 6-12 hours in total for surgery, they explained he would have a internal jugular central line a foley catheter, and they would place a feeding tube in his nose for nutritional support. 

These are all things that I expected but the one I did not was the dialysis port.  it was explained to us that preforming dialysis during the procedure helps keep the kidneys from failing, Lee already had some renal insufficiency coming in.  He only has one kidney they other one is atrophied we do not know why he was told most likely from a childhood injury.    They did tell us just a little about the donor, they were 70 years old but that is not an issue with the liver not having a real chronological  age with the liver that regenerates itself in someone that is otherwise healthy. Lee's surgery start time was 8:08,  I started to see a trend with 8's so I determined that it was his lucky number.  Jessie, Joetta, Dee and Jeri all came to sit with me during Lee's surgery. We all walked out to get jackets there was a pretty sunset that we could see while waiting the picture does not do it justice. 

The OR crew were super awesome to keep me up to date on how everything was progressing and how Lee was doing.  Dr. Gagnon was the primary surgeon, with Dr. Alonzo assisting.  Everything went super well for surgery he ended with a smaller incision and only one drain in place compared to the 3 that we were expecting.  Lee arrived to the ICU about 3:30 AM he was gone from me for 8 hours he went to the OR at 7:30 pm.  He was still intubated when he arrived to the ICU.  Everyone went home after the surgeon came out to let us know how things went.  I went up to the ICU and waited to be able to see him.  He was sedated so I just tried to rest but only got a couple hours of sleep. 

Lee was able to be extubated the following day (Tuesday 27th) around 11:30 in the morning, Lee did really well but he still had some confusion which is normal for liver transplant and he came to the hospital quite confused.  I spoke with the doctors and they say it will clear out over time.  Just one funny thing Lee said, he asked me who punched him in the gut while holding his right side where his incision is, I answered you got your new liver, he looked at me with a puzzled look and said "I ate a liver" I started laughing and he just gave me a dirty look.  That night Jessie and Joetta came to stay the night with him while I went home with my sister for some much needed sleep.  When I arrived on Wednesday (28th) I was told that Lee would be moving to T-10 this is the transplant floor that Lee had stayed on several times. 

I was just shocked that he was ready to leave ICU so soon.  My sister and I sat with him while they removed his foley catheter and his internal Jugular central line.  This only left his dialysis port in this left neck, the small bowel feeding tube and two IV's one in each arm. I sat and stayed with him that night and he was really confused and impulsive it reminded me of times he would get severely encephalopathy he would just get really stubborn and you could not tell him anything he was doing what he wanted.  I got very little sleep again that night.  on Thursday the 29th Dee and Jerri along with Jessie and Ron and Dilon came over to see him I left that afternoon to head home for some sleep I have learned that I cannot go days without sleep like I did when I was younger.  The staff felt that he needed a care attendant to sit with him so I could go home to sleep. Lee did not know what to think of that idea.  When I arrived Friday (30th) morning they decided that his kidney function was doing great so they removed his dialysis port he was still quite confused and was getting grumpy, I told him I needed to go home that night because Dilon was not going to be home with Sadie.He kicked me out of his room earlier then I expected to leave but I was not staying with the grumpy man.  Today Saturday (31st) Lee is much more awake today and less grumpy but feeling more pain.  He has worked with PT every day to get stronger and with OT to help with daily activities.  He also worked with speech he was cleared for thick liquids and a soft diet.  He even thinks thick
water is great.  We are waiting for his meal and he is a much happier.
 A little more about all the 8's
Lee was born the 8th child
He has 8 siblings
Lees surgery was in August the 8th
on the 26th (2+6=8)
the 8th phone call for a liver
with 8 different surgery times
it was 8 hours from the time he left to when I was able to see him again.
I am sure there are many more 8's in his life and now I will be looking for them this is why I say 8 is now his lucky number.
 I am adding screen shots of the multitude of facebook messages. 

Yet another call from Donor Connect

Yesterday afternoon we received a call from donor connect, they told us that Lee was on standby as a back up recipient for a liver.  Lee was not allowed to have anything to eat or drink after 6 P.M.  I asked Lee what he wanted to eat because it could be his last meal for a couple of days.  Lee decided to have Olive Garden, I ordered and talked Dilon into going to pick it up.  We all tried their new Lasagna Mia They were pretty good but not something we will all order often they were a little gooey
on the inside.
       

We received a call around the same time instructing us that Lee needed to be in the hospital lobby waiting for further instructions at midnight. So after supper we both tried to take a nap but with nerves running high neither one of us had much success.  Lee was super anxious so he was pushing me to leave so we left the house at 10:30 to take our drive to Murray.  We arrived and waited about 12:30 we received news that the primary recipient will be going to surgery for the liver, but the surgeon wanted us to wait 2-4 hours in the lobby. Lee was really upset this was call number 7 from donor connect. 

Lee just wanted to be up and moving his anxiety was getting the best of him.  After a while we decided to head out to the car and see if we could get a little nap while waiting on the next phone call.  With every update they wanted us to stay another hour. Finally at 4 A.M they said we could go home. Lee was starving so we went over to Ihop for breakfast then headed home.  After we arrived home we went to bed and slept for a little while.  I had to get up early for an eye appointment maybe I will get my new glasses soon.  We will just continue to wait for a phone call from donor connect maybe the next one will be the one.  

A few other happenings

We have many nieces and nephews but on my side of the family we only have one nephew.  We found out not long ago that his partner is pregnant.  We are super excited this will be my first great nephew on my side of the family.  Jesse (my nephew) also has a step daughter.  I am so excited to meet Jesse's partner Baylee and their daughter Lailahai. (I hope Jesse does not mind I stole his facebook pictures)

Also this past weekend we were able to spend the day with Kayleen, Joe, Joetta, and Kassidee.  They traveled down to watch Kass play soccer for Western Wyoming Community College.  Lee was not feeling well so we missed most of the soccor game but we enjoyed a nice dinner at sizzler with all of them before they headed home.  It was a good day to visit. We also got to check out Dilon's new car.  

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.