At Peace

Dad in Utah just a few weeks ago... out on the lake with his nieces.

 

 

I just wanted to update things on my dad's blog.

Dad passed away yesterday a little before 4:40pm.

I have been playing through in my head the past 4-5 days and all the sequences of events leading up to his passing.

He fought hard. His spirit didn't want to stop fighting but his body just wasn't up to the challenge. I feel like he didn't want to go, but he had to.

We haven't set a definite date and time for his services. With Monday being a holiday we might not have that information until Tuesday. Services will be held here in Mesa.

My mom is so strong. She never wanted to leave his side. She communicated with him through her asking him questions and him nodding or shaking his head throughout all of yesterday. She knew what he wanted and honored his wishes. She is amazing.

Love to you all and thank you for all the love and support you have given to us all these long years.

~Jen

I am having a problem with Blogger.

For some reason, there is no "Template" or "Lay Out" tab for me to select to make changes to things in the sidebar of this blog. I have the same problem with my personal blog. I haven't been able to figure out what's wrong.

If anyone has any advice/tips. Let me know!

Thanks!

Pay Pal Button!

Some people have asked if the Pay Pal button on this site still works.

It sure does! (I just tested it out!)

To make a donation through PayPal, you need to have a PayPal account. It's super fast and easy to sign up. (But, just so you know, they do get a percentage of the money donated. About $.33 for every $1)

If you are not interested in signing up for PayPal but you would like to make a monetary donation, you can do that at any Wells Fargo location. Just tell the teller that you'd like to make a donation to the "Murray Barrett Liver Donation Fund". They will look up the account. There's more info. on that in the right side bar->->->

If going into Wells Fargo doesn't sound fun, then you can always mail a donation to:

626 N. 99th St.
Mesa, AZ 85207

You all are awesome! "Thanks" to everyone who is helping to spread the word! :)

** Dennis Pollack! I don't know who are but THANK YOU for your recent donation through PayPal! :) You and everyone else like you are how the Lord blesses us with hope**

Got JUNK?

We are having a yard sale next Saturday (April 19th) at my parents house!

626 N. 99th St
Mesa, AZ 85207

If you have ANY thing you'd like to *donate please bring it to their house on Friday, or Saturday morning at the latest.
  
If you are in the area, be sure to stop by the yard sale next Saturday morning!

Thanks!


*all items that are not sold at the yard sale will be going to the thrift store

~And by the way. I just was looking at the title of this blog. Have we really been "doing this" since Aug. 2011? We are going on 3 years! The miracle is that my dad is still here! Through the grace of God we were able to get him health insurance. He has received excellent medical care at Mayo Clinic. I know that some days he doesn't know if being alive still is a blessing our not. Not feeling good EVER for days and weeks and months and years has got to be so hard. BUT, we still have hope that he will get a transplant...and we are still moving forward! Thank you everyone for every big and little thing you've done these past 2 1/2 years to help lighten my parents burden.

Update

My dad is going back to his second childhood! He just got a three wheel bike. :) I will try to get a picture of him on it. We're hoping this will help him to be able to get out of the house more often. Not being able to drive has been one of the hardest parts of this liver disease for him.

We had a Pampered Chef party as a fundraiser for my dad last Friday evening. It was a lot of fun! Thank you to everyone who came and also to everyone who ordered products online! :)

Tomorrow my aunts and cousins in Utah will be having their annual fundraising yard sale! They work so hard to put these together. We are so grateful to them for their support. They are amazing!

If anyone in AZ has items that they would like to donate, we will be having a yard sale at my parents house the middle of next month!

Hi, It's Jennifer

It's been almost a year since I have posted on my dad's blog! To be honest...I sort of forgot the sign in information...plus I have been a little busy with...moving...birthing a baby...things like that.

Anyhow. I thought I'd do a little bit of an update.

My dad is still waiting for a new liver!

He was also advised by his doctors to stop driving. The levels of ammonia on his brain were causing memory loss and really slow reflexes. (Like a drunk person with dementia)  He is on a medication for that and is doing better...but they told him they will reevaluate him in November and decide if he should start driving again.

Other than that. Things are pretty much the same. He goes in for regular visits and the doctors are keeping him as healthy as they can.

Also, We are looking for some good fundraising ideas. So...if you know of anything...email me @ bjflake00@yahoo.com

Thanks a bunch and hope you are all doing well!

Blood Clot

My dad's procedure went well today. They went in and put bands around the polyps (there's another word for them...but that's basically what they are...) anyhow. They put bands around them and they should fall off in a week or so.

When he is all healed up from this procedure they will start him on blood thinners for the blood clot that they found in a vein (or artery?) between his stomach and liver. Being on the blood thinners and all that will pump him up on the transplant list. That should all happen in the next month or two.

This is the nature of having a failing internal organ and being on a transplant list I guess. You gotta get worse before you can get better.

Transplant Coordinator Info.

I forgot to mention the person to call to find out if you are a good match for my dad! 

And let me stress again....this would be at NO COST TO YOU!

My dad's insurance covers him and the donor in a transplant situation. All of your testing, before and after surgery care, food, lodging...all of that is covered by his insurance. I do not think that it will compensate your wages lost from work though. That is something you'd have to pray about to know what is right for you and  your family.

This is a HUGE thing. I know that. But, I also know that both you and my dad will be greatly blessed. Mayo Clinic has a great support team. You will have a donation advocate who will make sure you know all the facts and will get you all the information you need to help you in your decision process.

The point is to be TESTED....find out if you are a match and THEN decide if donating part of your liver is something you feel is right to do. 

Again... whether you decided to donate or not...you will not have to pay for anything. Really. If you just want a thorough medical evaluation and a trip to AZ...for free...I'd say go for it! The more people who are tested...the greater the chance is of finding a donor for my dad!

Here is the person to call!

Kathy: 480-342-1010 or 1-800-344-6296

Another little update on my dad. He had an MRI today. Also. The doctor told them that these polyps in his throat are caused by bad blood flow due to the fact that the poor guys liver doesn't work right! If they burst, he will bleed to death. SO...tomorrow he will go in and have a procedure done that will stop the blood flow to those polyps.

 Keep those prayers coming!

Update

This is Jennifer! Long time no see, right?!

Life has been busy and blogger hasn't worked for me...so I haven't kept up on with this blog very well lately.

My dad is doing alright. He is tired most of the time...I think he is "sick and tired of being sick and tired". He had an upper and lower GI done yesterday. They don't have all of the results back yet. During the lower GI, they removed some polyps to run lab work on...check for cancer and all that. There are some polyps in his esophagus also. They didn't remove any of them for testing. They felt it was too risky.

I also just want to let out a BIG CHEER because my dad is still alive! He was given a year to live with this diseased liver of his and he's made it. We are very hopeful that a liver will become available again soon.

A live liver donor for my dad has not been found. All canidates and their information are kept confidential, so we don't know who has been tested and who hasn't. I started the process of being tested and then found out that I am pregnant. I am not sure how long I have to wait after the baby is born to start the process again. Probably at least a year. I don't know if we have that long. If you have O+ or B+ blood...please consider being a live liver donor for my dad! It will be NO cost to you. You will get the BEST medical evaluation of your life from top doctors at Mayo clinic. Also, a lot of the preliminary testing can be done where you live. You would have to come to AZ (again, at no cost to you) and go through a series to tests at Mayo Clinic eventually (if they feel like you are a good candidate). Please think and pray about this opportunity!

Hope all is well with you can your families!

P.S. If you do not know your blood type, you can call and ask your doctor about it. Or, you can go donate blood and find out that way.

NEWS!

My parents are going to be on Channel 5 News!

Tune in to Arizona Channel 5 on May 15th at 10 p.m. to catch their interview!

Or, go to THIS site next Monday night or Tuesday morning!

Tell your friends!

Also, if you are not an organ donor....go HERE for inspiration on why to be one.

We have a boy sweet boy in town named Zach. He was just diagnosed with leukemia a few weeks ago. He is in Phoenix for chemo treatments right now.

Zach also has autism. He is such a sweet kid. One time, when we were visiting his ward (for a baby blessing for missionary farewell...not sure which)...we sat behind his family and Zach held my hand for part of Sacrament Meeting. How sweet is that?

So, when Brandon and I were at a restaurant today and saw a donation jar with his picture on it...I just had to make a donation. I know from experience that every little bit helps...and although "money is not everything" is sure helps relieve some stress when you are facing not only medical bills but loss of income having to miss work.

Meet Zach HERE!!! ...then tell your friends about it!

(There's an awesome video of him downing a taco in less than a minute!) Like I said...he's a pretty cool kid! :)

~ love ya!~Jen

What's a MELD score?

My dad's testing at Mayo went well last week. His MELD score actually went down...again. A year ago, he was at a 17 or 18. Last time he had testing done, he was at a 15....now he is at an 8.

SO....what is a MELD score anyways!? MELD stand for Model for End-stage Liver Disease. So, basically, they have this formula (click that) that they use to determine your number and that determines where you get placed on the transplant list. The higher your number, the higher you are on the transplant list. Scores range from 6-40.

The doctor told my parents that with liver disease...it is common for your score to go up and down.

My dad had more blood drawn today.....not sure what for.....but hey, they are keeping a close eye on him so that's good right? I read that if you have a MELD score under 10 that you only have to get labs done every year. So, we'll see if that's the case with my dad.

Also! Other good news. My dad's insurance deductible dropped!!! I am just so grateful he has insurance and is getting good health care.

Really...it's such a miracle that he's doing as well as he is. I know it is because of the faith and prayers of family and friends....and strangers too.

Thanks for all of your support! Love ya!

~Jen

update

Sorry I didn't post sooner. But my dad is out of the hospital (since Saturday afternoon). They never did find out where the infection was coming from. ???

My dad was supposed to have a couple days of testing over at Mayo Clinic last week...but he had to reschedule it. SO...hopefully he'll be seen by his specialist soon.

This "waiting for a transplant" is such a terrible game. I don't like it. We have to wait for dad's health to get worse so that he can get bumped up on the list....which means he's getting a liver before someone else who is waiting....(weren't we all taught in school that it's not nice to cut in line?)....and then that means that MY dad gets a chance at better health while someone continues to suffer (not to mention the person who is walking around, going to work, spending time with their family right now who is going to die so that my dad can live.) Or dad can get part of a liver from a live donor (I feel much more comfortable with this option)...but these things take time and testing and....more waiting.

The thing that helps is knowing that the Lord has a plan. Things are easier when we can trust in Him and His timetable.

So, I am sort of feeling like the procedure they did yesterday was a total waste of time and money.
The doctor looked in the large bile duct...to check to see if that's where the infection is coming from...well it's not. They reported that there is no stone in there (great! we already knew that!) The gallstone is in the small bile duct...and they didn't even look in that duct or try to get the stone out.
SO....I don't know what they are thinking. (I know they are doing their best and I am greatful for it...) They did drain almost 3 liters of fluid off of my dad's abdomen (toxic stuff that isn't being processed by dad's clogged up liver). So, that helps!

Stoned!

It is for sure not the pnuemonia that has caused the infection that my dad is trying to fight off right now...it's that darn gallstone that's been stuck in a bile duct for 9 YEARS!!!

My dad came home from work on the night of our family Christmas Eve party in 2003...doubled over in pain...white as a ghost (seriously...have you seen my dad? People think he's hispanic.) He had worked a full day...bearly able to walk he was in so much pain. So, he got to spend that Christmas in the hospital, recovering from a Cholecystectomy. (Don't think I'm smart...I googled that! )And although they removed his gallbladder this sneaky gallstone didn't want to leave...not then...or anytime since! But, they're gonna try again tomorrow morning.

So...pray tonight and tomorrow and anytime in between that by some miracle they will be able to get that stone out tomorrow!

Admitted :(

I haven't been posting on my this blog lately. My dad has been doing so well...(by that I mean not getting worse.)

Well. Yesterday, my dad had a really bad fever...the chills and shaking and all that (Ibuprofen wasn't helping). My mom took him to the ER. They ran some tests and blood work and determined he was in the early stages of pneumonia...gave him an antibiotic and sent him home.

Today, he got a phone call from the hospital telling him that results came back from another blood test. They said he has an infection in his blood (something called cocci...which I think is a form of staph or another word for staph? I'm really not sure.) anyhow...they told him that he needed to go back to the hospital for a few days of IV antibiotics. (My mom just called to say that the infectious disease doctor said that he thinks that infection from dad's pneumonia has spread to his blood.....but the pneumonia isn't a very bad case....they are going to run more tests and see what they can find out.)....so basically....we just have to wait and see....but he is on IV meds and under Dr. care.

Dad was supposed to have a few days of testing done over at Mayo Clinic this week....but that's going to have to wait.

My dad has been having abdominal swelling again (even with his special diet.).....this swelling and the infection he has now could be from a clogged bile duct. ????

So anyways. Just thought I'd let you all know what's going on.

~Jen

Happy Valentine's Day!

I love my parents!!!

Thank you for the pictures Elizabeth Curtis!

gOaL!

Did you notice something new in the sidebar over there? --->--->--->--->

Isn't that AMAZING!?!

Could that have happened without YOU!? (certainly NOT!)

It feels SO good to have met our goal!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Dad is doing good.
His Chron's is in remission.
He will met with his liver specialist again in a couple months.
Right now he is sticking to his diet (extremely low/no sodium and no red meat or pork).

I'll keep on keepin' ya up to date!

Gifts...

The Three Wise Men gave gifts...then they followed the Spirit and took another way home. Because they journeyed another way, Mary and Joesph were able to take baby Jesus to safety.

You have given our family a gift. You could have done other things with that gift, but you followed the Spirit and gave it to us. Because of that...we will be better able to help save our dad.

Thank you for that.

Love,
The Barrett's, Flake's and Taylor's


A very special "Thank You" to: Anthon, Ashley, Roman, Sterling, Homer, Connie, Brendan, Katie, Betty, Mckay, Sherri, Gerald, Eileen, Lydia, Micheal, Garrett, Shauna, Byron and Shannon. (and anyone else!)~Thank you for the donation you made in memory of your father/grandfather, Brandon Longhurst. We miss him. He took such good care of his wife and was such a kind neighbor. Brandon and Betty...you have reared a wonderful family! Thank you for your examples of generosity! (Sorry if I spelt your name wrong!)

Merry Christmas!!!!

I remember when my Uncle Dell had a phone like this...it was the coolest thing EVER!

My parents are getting new cell phone numbers! Well...they have new numbers....but my mom is the only one with her new phone. My dad wont get his until this weekend...(assuming the roads are clear and they can make it up to my house!)

SO....here's their new numbers!

Lynette: 928-229-0842

Murray: 928-229-0067