Time for new hobbies

Lee has always loved building models mostly of airplanes, some cars and military vehicles. Our nephews Wyatt and Dilon are also into building models slightly different they build Gundums.  I bought one for Lee that I though he would like.  Lee and Wyatt sat for a couple sessions and was able to build a Gundum together it was amazing to watch Lee be able to sit and put it together. 

Lee's Gundum Gun tank. 

Our Newest Great Nephew

Felix Gordon Reed was born December 18, 2019 at 6:12 am.He weighed 7 pounds, 9.1 ounces and measured 19.5 inches at the time of his birth. Felix was welcomed into the world by his proud parents Baylee Wadsworth and Jesse Reed. 

Felix is the cutest little monkey.

Jesse and his family are the cutest too.  His (Soon to be) Wife Baylee and bonus daughter Lailahni.  

I cannot wait to meet my new great nephew.  Maybe soon. 

Thanksgiving and a couple other things

While Lee was in the hospital my Friend Tabitha went on vacation to Japan  she brought us back a couple of things.  I got a cute patch for my jacket, a etched glass tradition house and some chop sticks.  She brought Lee a model of the battleship Yamato, and a model of a Japanese submarine. Lee loves all things about World War II.

Our Sadie was also sick one night she was totally restless I finally got her to go outside and she peed blood, I took her to the vet the next morning.  She had a really bad UTI, she was clear of any bladder stones. She just layed around for a couple of days and she was super unhappy at the vets office. 

Finally it was time for thanksgiving dinner,  it was a special day because we have so much to be thankful for this year.  We talked about Lees donor and all the blessing that have happened to us this year we have truly been blessed.  We love having Wyatt and Dilon with us for the holidays.

Family pictures

Cathy and Ed came for a visit we decided it was time for some family pictures.  We had fun with our masks and finding good locations for pictures. 

Lee and I have not had pictures together in a long time.  We had fun with all the poses and trying to get Sadie to comply.  Ed and Cathy had some great shots too.

We also went out for dinner.  The Strap tank in Springville was good just a little disappointed that the waitress added her own tip to our ticket when we placed a cash tip on the table.  It was a good visit it is always good to have family here. 

The rest of Lee's hospital stay and rehab.

 September 2nd Lee is getting ready to move to the Rehab unit.  He will be there 2-3 weeks.  He will have at least 3 hours of therapies a day including PT, OT and Speech.  Lee is not that happy to go through rehab again but he will do so much better once he has gone through the process.  After working so hard to get to this point we need to do everything possible to get Lee better and back to normal life.  Lee was happy to be able to wear regular clothes and not to be in a hospital gown all day.  Rehab started off really good, Lee asked when he would be going home and he was told he needed to stay for 2 weeks He was not happy with that answer.  everyday he would tell me they were not going to let him ever go home.  On September 9th Lee was able to get his dialysis port and his feeding tube removed.  his kidney function is doing really well and considering he only has one kidney and went through transplant surgery that is amazing.  Lee was so happy to get that feeding tube out, he was having PTSD from his previous experience having a feeding tube from September 2018 to March 2019.  thankfully this one was temporary.  This was his Happy face.

on September 11th after several days of working with speech Lee finally got real food not chopped food that they were giving him for the previous days.  He was so happy to finally get food that at least looked good and he could eat better.  For lunch and dinner he was getting mashed potatoes, and carrots with some kind of ground up meat.  He was so tired of that kind of meal.  

A couple of days before Lee was planning discharged his wound began to leak he has a couple areas that opened up one at each end of the incision and one right about at the curve.  in the picture Lees belly was still distended from surgery and he has bruises from the heprin (blood thinner) shots. He also had one giant drain in all my years of nursing I have not seen a 500 ML JP drain.  I had to get a picture of it.  I got Lee a couple of gifts for his transplant I could not choose what t-shirt to get so I figure he will be getting a few over the next year.

Lee got better and better and was finally ready to leave rehab and come home.  He worked really hard with all his therapies and even went shopping, and cooked me grilled cheese sandwiches and tomato macaroni soup. The day finally came for Lee's discharge he made the rounds to say goodbye and as he was leaving they play a song for each patient and overhead and all the staff step out to cheer them out.  It was an awesome thing and I love Lee's smile.  (I will try to get the video to work)

Lee has been doing great since discharge He has been in the clinic every Monday and Thursday to make sure his medication levels are where they need to be.

 He has been working with out patient Speech, OT, PT and cognitive therapy.  This has kept us pretty busy but we have found a little time to get in a good nap.

We were finally able to go out and eat a couple of time but we have manly kept it in the house because of Lee's immune system they recommend not eating out often and absolutely no Buffets.  Lee and I likes the Off the hook food truck and it is based out of Wyoming.  Lee's two sisters came to visit and we went out to Bam Bam's BBQ they make swachos which is BBQ nachos with chips baked beans and the meat of your choosing they are really really good but you better come with an appetite because it is a big order.  

I also took Lee out to Utah lake for a drive he was feeling really good and decided he wanted to give driving a little try since there was no one around.  Lee has not driven in two year, when he developed enchepolopothy we together made the choice for him to quit driving for everyone safety.  He cannot wait to get the official ok to start driving again.  

I also was able to work on Lees blanket that I started last year.  I told him it was for his transplant but I had not been able to work on it for a while because it was summer and way to hot to hold that big blanket in my lap to work on it.  It is finally done and Lee and Sadie loves it.  

We have just been keeping up with appointments and therapies I plan on returning to work on November 1st and I know Lee will be ready by then  he is doing so Awesome.  

I will forever be promoting organ donation so you will see memes often from me about it.  

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.

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.