MAY 23, 2013

Our family reached a milestone today.  We can't believe Noel received his transplant a year ago today!  Life could not be better for him.  His doctors say he is doing remarkably well although he is still is seeing kidney specialists and eventually will need a kidney transplant.  For now drinking a lot of water, eating right and exercising.

So much has gone on this past year it is hard to comprehend.  As I had mentioned Noel started working but after a month he had to quit because he was on his feet 24/7 and by the end of the day his feet, ankles & knees were swelling.  He now is working part time doing the work he loves to do before he got sick and can take breaks when he needs them.  He has kept himself a little busy with feeling so much better and able to enjoy getting out.

Outing at Brighton Ski Resort Jan. 2013. . .

 Jackson's Jr. Jazz Basketball. . .

Noelle's Coach Pitch Softball. . .

Brooklyn's 4th Birthday. . .

MaKailee's Coach Pitch Softball. . .

MaKenzie's Girl's Softball. . .

Brett's Baseball. . .

Taking in a softball game. . .

Emma havin' a good time. . .

 Taking the trees down. . .

A bit of yard work. . . 

Taking in a Bee's Baseball game. . .

* * *

Taking a look back to 2011 at this time Noel started the rigorous tests needed to be put on the transplant list.  Poking and prodding became a way of life.  Tests need to be done to make sure there were no signs of cancer, blood clots, keeping diabetes under control, shots, CT scan and lab work monthly.  Water pills needed for that extra fluid building up in his stomach.MELD SCORE 15. . .

* * *

Fast forward to 2012 at this time.  Noel has slowly gotten worse experiencing times of confusion and slow motor skills.  The morning of March 13, 2012 we found Noel laying on the floor unable to move or speak.  Brett and I rushed him to the University of Utah where they immediately admitted him with high levels of ammonia over 137 in his system.  After a few days of extra lactulose given and other medication to help with his itching they released Noel March 16, 2012.  Labs needed to be done weekly now and paracentesis at least once a week to remove the excess fluid in his stomach.  

March 30, 2012 labs MELD SCORE 25

April 6, 2012 - Labs & Paracentesis (6 liters of fluid taken) MELD SCORE 20

April 18, 2012 - Labs - MELD SCORE 24

April 19, 2012 - Had to be admitted into hospital and treated for an infection.  IVs, x-ray, blood transfusion & Pic Line put in place.  Moved to the IMCU Floor April 21, 2012 where he could be monitored more closely.  Sleeping with oxygen.

April 22, 2012 - Paracentesis - Blood sugar levels reaching the 400's - Labs

MELD SCORE 31

April 23, 2012 - Moved Noel to the Acute Internal Medicine Floor - Blood sugar now in the 300's.  MELD SCORE 33

Doctors have informed us that Noel's kidney's have taken a beating these last few months especially after this last episode.  They also informed us today that Noel was on hold for a liver transplant.

April 25, 2012 - Released from hospital but his stomach is starting to already fill up again.  Heavy dose of antibiotics given.

April 28, 2012 - U of U ER for a emergency paracentesis and culture

April 30, 2012 - Labs, Paracentesis & Albumin Infusion - MELD SCORE 24

May 3, 2012 - Labs - MELD SCORE 28

May 7, 2012 - Labs, Paracentesis & Albumin Infusion - MELD SCORE 29

May 8, 2012 - Admitted into the University of Utah - enlarged prostate, kidney function not good, put on a restricted diet (Renal Diet), ultrasound, blood sugars high.  Informed we would need to meet with a kidney specialist.  MELD SCORE 30

May 11, 2012 - Released from the U of U Hospital

May 14, 2012 - Labs, Paracentesis & Albumin Infusion - MELD SCORE 26

May 19, 2012 - Bowling Fundraiser to benefit Noel & Mike

May 21, 2012 - Labs, Paracentesis (7 1/2 liters removed) & Albumin Infusion

Brett's baseball team barbecue at our house. . .

May 22, 2012

 Received a phone call from the University that Noel would be put on hold for 24 hours for a transplant.  We made sure our bags were packed and ready to go at a short notice.  

Janet a coordinator at the U called and said his MELD SCORE was 25. . .

Later that day we attended Brett's baseball game to which they won!  Had a bite to eat with Carl & LuGene Hansen after the game and then it was off to head to bed.  Noel was extremely tired.  We had not yet received a phone call from the U.  Noel and I headed off to bed about 10:30.  Noel seemed very calm and relaxed and went to sleep quickly I believe I did as well because the next thing I remember is a dream I had that this would the time for Noel to have his transplant and that he would have no complications.

May 23, 2012

Noel transplant journey began with a 2:30 am phone call from the the University Transplant Office.  They informed us that a liver was available and that we needed to get to the hospital as soon as we could.  They felt this was a good match for him and that they wanted to do transplant by 7:00 am but many tests need to be done before that time.  Noel awoke as soon as the phone rang I said this is your day are you ready he said Deb I've been ready for the last two years for this time.  I kissed him and with tears of joy we started calling family members.  Noel called John Barlow & Alan Hague to have them come and give Noel a blessing.  This set the tone for us to be in a very calm stage especially myself since I was driving and Noel going through a very long and difficult surgery.  After they were done with the blessing it was time to head to the hospital.  Noel was given instructions to take the pre-transplant pill's which were a heavy dose of antibiotic's before we left.  All is history for. . . 

Noel's Transplant Journey.

* * *

We would like again to take this opportunity to thank Max for becoming a organ donor and his family for all that they have gone through.  We have a special love for all of them. . .   

Donate Awareness Month!

I thought this is fitting being Donate awareness month and all....

               But we would like to introduce Max... Max was the donor of Dad's Liver, This past week I have had a chance to start to get to know Max's family. His mom Janet, his brother Ben, and sister Abby. We are very excited to get to know them and learn more about Max. 

        Max at the time was 23, he was very close with his family. They live in Henderson, NV. but he moved here to Salt Lake to attend school. They are Denver Broncos fans.... (Yes I had to throw that in there because it is so cool!). There is still so much to learn about Max and his family and this is only the beginning. We are excited to have this family apart of ours forever!  

     Words will never begin to express how grateful we will always be to him and his family. As his mom told me that Max always thought of others, this is what he would have wanted so others could have the second chance at life. In a letter from his mom she went on to say.... "this donation would be a comfort to his family, knowing that since Max was so cool, we were going to spread him around." 

     These are favorite pictures of Max that his mom sent me. 

This is Max!

After this one his mom sent she said: 

"Max was a real trip. The bare chested farmer tan captures a lot about him"

Ben, Abby, Max and Janet 

- This is a great picture of them all.-

***************

   This August we are going to be attending the Dash for Donation 5k this year it is on Saturday August 3. Dad is very excited and wants to join us this year because he is feeling so much better. Anyone can join our team I will be registering by Mid to late July. Because we have a team larger that 5 the fee is 20 per person, If you would like to join "Leon's Liver" Team let me know and I can add you. Email me at kristine@checkcity.com. I will be able to register everyone together and pay all at once.
    -Kristin

                                                http://www.yesutah.org/content/5k_dash

   

February 23, 2013

It has been 9 MONTHS since Noel's Transplant.  Things could not be going better for him.  We are at a point now starting in March Noel will only have to have labs drawn once a month at the University.  As long as the numbers look good (knock-on-wood) once a month is all we have to for the time being.  We are still seeing his liver doctor every three months and the kidney doctor the same.  As I reported in an earlier post Noel will eventually have to have a kidney transplant.  In January they wanted us to start the preparing to be put on the transplant list.  But his kidney doctor determined that he would like us to wait for awhile.  We have been told that we would need to go through the whole process of being put on the list again.  It feels like we are pros at this now.

Noel is working part-time at O'Reilly Auto Parts.  It has been good for him other than he is on his feet 24/7.  So by the end of the day his knees, feet & ankles are a bit swollen.  He likes working his brain with those truck & automotive parts to help people.

On February 3, 2013 Noel had the opportunity to bless his granddaughter Emma Jo Murphy.  Thank-you Carl & Chris for helping bless Emma.  A big thank-you to all of those family and friends who attended as well.

Joe & Emma

A nice nap after my Blessing!
Love my name!

* * *

Looking back two years 2011 Noel had just finished the last of the ERCP's on Feb. 18, 2011 removing the last of the stone in the pancreatic duct.  Visited a diabetes nutrition counselor and instructed to test his blood sugar 3-times a day or more if needed.  Appetite good but getting really fatigue after a long day at work.  MELD SCORE 15. . .

Fast forward to 2012.  Finished up with some vaccinations he needed.  Noel sleeping a lot more and not eating much.  Attending every 3 months liver & diabetes clinic appointments.

Blood sugars good.  Trying to go to the mall once a week for a bit of exercise for Noel, Brett & I.  Noel gets really tired so short walks are good.  Noel's weight creeping up due to the fluid build-up in his stomach.  By the end of the month Noel is showing signs of Hepatic Encephalopathy.  Had labs at the U done.  MELD SCORE 20. . .

* * *

See Ya All Next Month ! ! !

January 13, 2013

A friend reminded me today that she hadn't seen a blog posted from me for awhile, a month to be exact.  Thank-You Leah for reminding me!

Noelle 6th Birthday celebrated in December!

Cousin's - Christmas Dinner, Craft & Movie Party!

The kids decorated their own boxes for the drive-in movie.  Yummy popcorn!

Yummy pizza, cake and fun crafts!  It was a BLAST!

* * *
Christmas Eve!
With this past season of giving and many things to be grateful for our family is so thankful that Noel is doing so well to this point.  Without all the love and support of family, friends and church members we don't know how we would of endured this whole process of a transplant.  I believe and know it has made our family much stronger. . .

This last Christmas Eve brought us together as a family to remember our son, brother & uncle Chad who we lost 10 years ago.  Every Christmas Eve since he has been gone we have walked through snow sometimes a skiff to knee high and with temperatures very low to light candles, place roses on his grave, recall memories and have a family pray.  

Chad Noel Smith

10/19/83 ~ 12/25/02

You were taken from us so young

and unexpectedly 10 years ago today. 

We will always miss your smile,

laughter and jokes, but your memories

will forever be in our hearts.

Merry Christmas!

“Bud”

We Love & Miss You,

Your Family

* * *

Christmas Day!  

Thanks Amy, Noelle & Emma for spending Christmas Eve & Christmas overnight with Noel (Papa), Brett and I (Nana)!

* * *

Christmas Day - After dinner and singing Happy Birthday to Noel I explained to our family that Noel & I had a couple of letters we wanted to read to them.  I preceded to read to our family the letter Noel & I had presented to his donor family just before Christmas.  This was an easy but hard letter to write.  I explained as Noel lay in the hospital after his transplant tears of joy ran down our faces as we started to write our letter.  We had now put it off until just before Christmas.  It was such a fitting time for us to finish this letter with Thanksgiving & Christmas to reflect on how thankful we were for such a giving family to donate there loved ones organ to Noel.

After I read our letter I preceded to read the letter we received from Max's mom. . .

Max would of celebrated his 24th Birthday in November his mom writes.  He was attending S.L. Community College studying art & graphic design.  He was aiming to attend the University of Utah.  He was also a manager at Blockbuster.  

In a picture of Max with his sister we noticed that they were Denver Bronco Fans!  How fitting that the Evans Family, Noel, Brett & I are all fans, as well as our Chad was!  

In closing his mom writes:  The comfort I take in Max's passing is that he went out happy and, for Max, on the top of the world.  He was living up to his own expectations which were quite high.  I hope that you will remember that you now have as part of you a remarkable and loving young man.  Who made his mom proud even in his death making it possible for others to live.  Please, please pass on the love. . .Janet, Max's Mom 

We thank you Max for another chance at life for Noel!

Noel & I would like to give a big THANK-YOU to

  Brett, Carl & Lu, Violet, the Murphy, Rosvall & Evans Families for spending time with us Christmas Day and for Noel's Birthday!  For also giving us the support during this time. . .

* * *

December 2010

Noel already has had his 4th ERCP on his pancreas to help remove the stone blocking in the duct.  The appt. started at 12:00 noon.  Surgery started at 2:30 pm and didn't end until 8:30pm that night.  Since Noel was the only one left on the surgery floor the nurses shared there Christmas Party dinner with me.  Yummy!  I was able to take Noel home by 10:30 that night!  His itching is getting very intense at times his blood sugar is bouncing up and down.  Four doctors appts. this month.  MELD SCORE 10. . .

December 2011

By now Noel is retaining water.  Paracentesis & Infusion performed.  Prescribed another medication for water retention.  Doctors want him to record his daily weight, go on a low salt diet and limit his fluid intake to 48oz.  His liver is starting to fill harder.  Clinic appts. every three months.  More Lab Work, Diabetes, Eye & Internal Medicine doctors appts. to go to.  

Noel last day of work Dec. 13, 2011. . .

December 30, 2011 received a call from the U of U Transplant.  Noel was on hold for the night for a transplant.  Emotions ran high!  When I received the call Brett & I were at the gas station filling up the car.  I started to cry and told Brett this may be it.  The coordinator said she would call us back but to be prepared.  No call came that night but by 9:00 am the next day December 31, 2011 the call came.  The surgeons had rejected the liver for Noel.  What a disappointment for us but knew there were reasons why!

First of December MELD SCORE 21 end of December MELD SCORE 15. . .

* * *

By the end of January I should be able to tell more about Noel and his transplant progress after his doctor's appts. and continued weekly lab work that need to be done.  

Thanks for reading my blog and especially all of your prayers
. . .Deb