So You Had A Rough Day?

As we recover from our time spent at Primary Children's, we are slowly finding ourselves catching up on sleep.  Eva is starting to act more like her old self and is excited for school to start tomorrow.  She has a pink fanny pack that houses the pump that she has attached to her 23 hours a day.  Nellie made sure she didn't have the ugly black one that came from the home-health company, she also helped Eva decorate the pack to make it as palatable as possible.  

We are becoming pros at changing out her medicine, which we only have to do once a day.  Eva is excited to watch her collection of syringes grow as we have to flush the line with a saline solution and she gets a new "squirt gun" every time.  

I've had a few days lately where I have felt overwhelmed.  I know Nellie has felt the same.  Even with all the love and support we have felt, there are times where I wonder when things will get better.  At times like these, I've always felt comforted by a talk that Jeffrey R Holland gave 14 years ago called "An High Priest of Good Things to Come."  He concludes his talk by telling a story from when he was a young father attempting to move his family to the east coast.  It makes me smile, I thought I'd share it with you:

Diagnosis and What's To Come

Yesterday as I sat at work my phone buzzed and I looked down at a text message that removed all my focus.  It's been tough trying to work this week and be focused on the task at hand, so the fact I had been was a miracle in and of itself.  It was from Nellie and it read: "Finally! Good news. Preliminary pathology report came back.  The spot is an abscess, not a tumor.  We are most likely looking at just infection which means we can go home tomorrow with the iv antibiotics for a few weeks."

First of all, isn't it impressive that my wife punctuates text messages?  It's nice.  A dying art really.  It's hard to express the joy and relief that washed over me.  Even though we have been confident all along that all would be well, it always bothered me not having answers.  It was nice to have an answer, even if it's just a preliminary answer.  I was anxious to drive up to PCMC immediately and take them home.  Unfortunately, hospitals don't move that fast.  Even with the great news, there is much to do before we can actually be discharged.  We have to be trained on how to care for the picc line.  We have to sign a ton of documents I am sure.  The good news is, we are going home!

One of our friends told us to not tell anyone we were coming home or it would be delayed, so I'm not saying when just that we are.  Yaya is feeling back to normal for the most part.  Along with feeling better, she is also sassy and bossy.  Being spoiled in the hospital is tough on a little girl who has to adjust to regular life again.  In many ways she was treated like a princess for the last week: unlimited meals in bed, toys that come with meals, every visitor seems like they brought a gift with them, all of her messes were cleaned up, she was allowed to dictate what was on tv at all times.  She also had unlimited access to crafts and art supplies that she could start and finish whenever she wanted.  Transitioning back to limits is going to be fun.  We're excited to get back to "normal."

She is going to be on antibiotics for six weeks is what we are being told right now.  We are lucky that she is going to be on a slow drip type of system so she won't have to be taken out of school for her medicine.  She gets to wear a fanny pack of shame to hold her medicine.  I hope it doesn't prevent her from making first grade friends.  Being the kid with a weird fanny pack might help, what do I know?  Part of the reason she is going to be on the antibiotics for so long is because the abscess isn't drain-able.  The liquid in it is thick, like a syrup and is not conducive to normal drainage.  

We are relieved that this chapter is closing.  Nellie has been a trooper and has been at her side non-stop since Saturday morning.  I'm certain she can't wait to sleep in her bed again.  Scott and Lulu are sure to be thrilled to have mom and dad back.  They have been very well taken care of by Alexis who all-but stopped her own life this week to help us out.  We are so grateful to her for her love and patience!  I'm not certain when real sleep will come, but I am sure it's going to be deep and long when it does.

Thank you to everyone who has followed along and has asked about Eva.  We have felt the power of prayers in our behalf!  We have felt divine peace and guidance though wearied along the way.  We have felt so loved and humbled by everyone rallying around us.  We have heard from those great friends that you can go years without talking to and the bonds still feel strong as every.  We have been able to visit with some great people who were willing to do anything to help us out.  There have been so many sacrifices made in our behalf that we won't ever be able to repay--mainly because we know what they meant to us.  

Perhaps now we can go back to what this blog was intended for: to serve as a window into our lives.  I have been the dominant voice here, but Nellie has plenty to say.  She wants to share from her own perspective the events of the last week.  I am sure it will be much more eloquent, but I am okay with that.  This has been a great way for us to communicate.  We love all of you!

Thank you Primary Children's for taking Eva from this:

To This!

Picc Line and Biopsy

I'm actually writing this blog post (using Dragon Dictation App) as I drive back to primary children's for the second time today.  After going to work this morning, driving back up at lunch for Yaya's procedure, going to work this evening and then going home and driving back up tonight I'm  just passing 350 miles that I've driven since Friday. I'm exhausted but I'm grateful that things seem to be looking up.  Here's a brief update for today: the doctors came by last night/this morning and told us they were going to be installing A picc line and also biopsying a piece of liver. In order for the picc line to be installed Eva needed to be sedated.  After she was sedated they took a needle and inserted it into her liver In order get some sample pieces of her liver spot so they could better understand what it was.

This Illustrates the Placement of a Picc Line

For those who don't know (which I did not prior) what a picc line is it like a long hose that goes from the upper part of her arm and inside across the shoulder and then down to the chest.  Her antibiotics are going to be injected at the port on the picc line.  Before were able to go home Nellie and I need to be trained on how to clean up and maintain it.  As for the antibiotics it looks like she's going to have them for 14 to 28 days.  They will need to be administered every six hours which means with school starting that she won't be able to attend a full day of school as Nellie will have to pull her out of school early to give her her medicine which takes about a half an hour to administer.  It looks like a long road ahead but hopefully this is a solution that allows Eva to get better!

Yaya's Picc Line in Place

Looking back at Friday morning when I first took her to InstaCare I felt kind of foolish when the first doctor gave me the impression that I was an over-reactive parent.  Every step we took to escalate the care I second guessed what we were doing.  I'm not happy that Eva is sick, but I'm happy we listened to her when she told us how cruddy she felt.

Yaya and Mom Prior to Her Procedure

 We are hoping again that we get to go home tomorrow. If we do, it will feel like the toughest part is over. We are again so grateful for all the support we have received. So many have been so kind to our little family in ways we can never repay!  

Our Bathroom Door at PCMC with Artwork by Eva and Cards From Well Wishers

Day Four & Counting...

Here we are at the close of another day. We have almost as few answers as we had coming into the day.  It is mildly frustrating not knowing when the answers will come, but we take comfort knowing we are in the best place possible.  It is easy to have perspective when you're surrounded by those who have it much worse.

Highlights and such of the day: Yaya got to be on tv today.  Kind of.  The Forever Young Zone does a craft show for kids to follow along in their rooms.  Eva wanted to go participate so she could be broadcast on the hospital's tv system.  She was very cute.  They made an art project, a fish in a bowl.  She was looking so amazing with her ratted hair. what do you expect in a hospital?

We also had some visitors: Christopher, a good friend who was in Nellie's photo program at BYU came by and we had a great visit.  He also took some beautiful pictures.  Emily and Becca came with their kiddos--they were here when I rolled in from a visit to work and home.  Mommy B (Jill's mom) brought us a delicious dinner.  We are being supported by so many friends. It has meant a lot to hear words of encouragement from every area of our lives.

We had visits from doctors who specialize in infectious diseases-- the current working theory. They wanted to know what animals she'd been in contact with, what third world countries we'd visited and if anyone in our house is a leper.  It feels a little bit like being in an episode of House, but our doctors are much kinder and there isn't nearly as much drama.

We do know that we will not be headed home tomorrow.  They will biopsy the spot on her liver tomorrow and see what they can find out from there.  We appreciate all the prayers that we have been the recipients of.  We are so humbled by all of the love we feel.  We are happy to answer questions if you have them, chances are we won't have answers, but that's okay.  Goodnight.

The Update That Is Really No Update At All...

Today we took Tutt and Lulu to visit Yaya.  They hadn't been able to see her since Friday morning and Tutt was particularly concerned about his little sister.  When I returned home last night I came home to an immaculate house that Tutt and his aunt Alexis had cleaned.  Tutt has been amazing through all of this, so mature and caring.  He and Lulu had made cute cards for Yaya and thy were excited to give them to her.  After church we came home and gathered up all our supplies. Nellie had a long list of things we needed up at Primary Children's.  Some of our neighbors had brought by gifts for Yaya that we packed also.

Yaya in the Wheelchair She Loves to Be Pushed

When we arrived at PCMC, it was like Christmas! She had several presents to open, but she was even excited about the toys of hers that we'd brought. She couldn't believe that we knew all the toys and DVDs she wanted. It's amazing what happens when your mom knows everything about you.

Yaya (right), Lulu (center) and Their Cousin Hulk

Tutt Playing the Wii in the Forever Young Zone


Tutt and Lulu joined Yaya on a trip to the Forever Young Zone. The FYZ is a really neat amazing toy room where kids can go and forget they are in a hospital for a while.  Yaya needed some medicine changed out and our nurse told us they don't allow them to do any medical procedures in the FYZ. I thought that was really neat. The FYZ is named after Steve Young who I can only assume donated some serious cash to help pay for the amazing facility. Never hurts to have a tie to a BYU great if you want me to think something is amazing.

Great Display Outside the Forever Young Zone

Yaya has been feeling better today, her fever has been down and she's been more perky.  When her medicine starts to wear off, you can see it in her mood, but she's been a trooper.

We got visits from Grandma and Grandpa Perkins, Great-Grandpa Perkins, Aunt Alexis, Aunt Briahnna and Uncle Davin and their two cute squishy children.  We closed out the night with a visit from some of our favorite friends Jill and Brian.  Jill and Brian know far more about PCMC than I ever hope to.  Their littlest one was a heart patient ere as a newborn and is doing great a couple years later. It was very nice to sit and laugh with them.  It's nice to forget about life for a while.

We'll have a busy morning tomorrow as we're gong to get some results about  how the antibiotics are working.  If the spot on her liver has shrunken, I imagine we'll be on the way home. If not, the next step sounds like a biopsy and possible surgery.  We hope for the best, but are trying to be prepared for anything.

Yaya at the End of Another Long Day

Yaya: Well That Escalated Quickly!

What a surreal experience it has been to be back at Primary Children's Medical Center.  Nellie and I have a strong affinity for PCMC primarily because we used to volunteer there when we were first married.  For 18 months we would go up on Friday mornings and spend 4 hours pushing an activity cart around the 3rd floor (which at the time included the MED/SURG unit and the ICU) offering cooped-up kids an activity to take their minds off of their boredom and pain.  We loved our interactions with the kids and felt so fulfilled in serving in such a small way.  

We have also had the opportunity to participate in the KSL radiothon that raises money to help the hospital to help those without means to pay for their care.  We have loved being able to take calls and participate in the fund-raising.  My parents and close family friends have been involved for years so it was really easy to love Primary Children's.

Nellie and I while we weren't taking phone calls for the KSL radiothon on the third floor of PCMC.  February 2013

Growing up, my parents participated in The Festival of Trees many times, which is another fund raiser for PCMC.  I remember watching them formulating and executing a plan for a tree for the festival.  It was odd to me that the work seemed to start in June or July in preparation for the Christmas season.  

Over the years we have many people we love who have been treated at the hospital.  Some of our friends and family pretty well have the whole place memorized and are readily recognized.  In all the time we've loved PCMC and its mission, we never dreamed it would be us benefiting from their excellence.  We have very healthy children so of course there would never be a need for us to use the hospital.  Of course, how many times does a story start that way?

Thursday night I got home from work and relieved my sister Darby who had been babysitting for us.  She told me that Yaya was not feeling well and had a headache and a fever.  I gave her some Motrin, a father's blessing and put her to bed.  Unusually, she fell asleep almost immediately.  That should have been my first clue.  Nellie was up in Washington with her cousin visiting their Grandma George.  For the past few years they have gone up on the same weekend every year to take Grandma to a family reunion.  Pretty short trip really, we thought I could handle it with some help.  

Six o'clock the next morning, I became aware of a little body in bed next to me.  Yaya clutched her bottom right rib and told me that her ribs were hurting her.  Her fever was still there as well.  We gave her some more Motrin, a drink of water and she fell back asleep for an hour.  When she awoke again, the pain was still there and after a bath that didn't help her to feel better, we decided to head to the Instacare.

At the Instacare, they took a urine sample (Yaya thought that peeing in a cup was about the grossest thing she had ever heard of) and did a strep test, both of which came back with no notable results.  I felt a little foolish for having brought Yaya to the Instacare at this point.  Figuring I must have overreacted we went home.  

After breakfast, I dropped Tutt and Lulu off with my sister Becca and took Yaya with me to work.  That worked for about an hour and a half, until Yaya again grabbed her side in agony and I decided to call her pediatrician.  

The nurse I spoke with at our pediatrician's office suggested after some questions that Yaya might have constipation so we followed some recommendations to help her if that was indeed the case.  After taking some fiber, Yaya immediately ran to the garbage can and proceeded to throw-up everything she had in her system.  She then went to take a nap, while I researched what might be wrong.  

My thoughts kept coming back to appendicitis.  We have a decent family history on both sides and Yaya was pretty insistent that she was feeling serious pain.  After a one hour nap, she woke up and cried in pain.  We then headed to our pediatrician's office.  

Yaya at the pediatricians--I love how blue her eyes look here.

At the pediatrician's office, Yaya was very brave (since her last visit there was to finish up her immunizations she was absolutely convinced there were going to be shots involved).  Although there were no strong signs that said there was definitely something more at play than a cold or flu, our good doctor could see how miserable Yaya was and sent us to the American Fork emergency room just to be safe.  

Prior to entering the emergency room, Yaya told me that she felt all better.  This was because she knew her siblings were at an amusement park and she wanted to join them.  After being admitted the doctor's began with an ultrasound.  They ruled out appendicitis among other ailments besides that the first ultrasound produced no results, the second one they located what looked like a gall stone, which the third ultrasound ruled out.  

After the 3rd ultrasound, Yaya went in for a CT scan.  She was brave and held still for the imaging to complete.  For being in so many new situations, she rarely even expressed concern, she was just so tough.  I was so proud of her.  In the CT scan images, they found what looked like an abscess on her liver approximately 2 cm long.  They sent her for a 4th ultrasound to pinpoint the spot on her, but because it was under her ribs, they had a difficult time trying to find the spot.  

Yaya's CT scan

Up until this point, I figured we would be home by the evening even as the hours crept on from 5 to 6 to 7 and on, so I was blown away when the doctor came by our room to tell us he had consulted with some doctors up at Primary Children's who wanted her to be sent to their emergency room.  You could have knocked me over with a stiff wind.  I think I lost my breath for a minute, but was soon preparing to call Nellie.  

In all the waiting, my phone had died and was charging.  Just after receiving the news, I had enough juice to call Nellie.  When I reached her, she reacted about the same as I expected.  She immediately began to cry and told me she wanted to come home right away.  It was horrible to think about her being all those miles away unable to comfort her beautiful daughter who was having to settle for having her dad around instead of mom.  I told Nellie that I didn't think coming home made sense at this point, until we knew more--but I don't think she was listening.  She was already figuring out how to get home to her little girl.  

I got permission for Yaya to forgo the ambulance and for me to transfer her by private vehicle.  Since she was stable, that wasn't a big issue.  I started to post some Facebook messages to inform those we love about the situation.  I was blown away by how many texts and messages I got.  It was truly humbling how many people were willing to drop anything to help us.  

Yaya after first arriving at PCMC

When we arrived at PCMC, we were ushered back to a small room in the back of the ER.  After a little wait another doctor came to see us.  He was wonderful and was very understanding about the stress of the day.  At this point it was around 11:00 pm and we had spent the better part of the day in different hospital settings.  I had answered the same questions and told the same story a dozen times.  Fever, headache, abdominal pain, throw-up, more pain, doctor, doctor, doctor, test, test, test.  He was so comforting as he explained the buck stopped at Primary Children's, that we were not going anywhere else and they would find the problem.  

My mom and dad came up to support me, and my father and I administered to Yaya with a priesthood blessing.  After an x-ray that ruled out pneumonia, they admitted us to the Surgical Unit.  The next doctor that we spoke with explained a lot of what they knew it wasn't, but said we could do more on Saturday morning.  

We got on the phone with Delta airlines to see if we could change Nellie's flight.  They were fantastic when they understood the circumstances.  Nellie got moved to a flight that arrived home before 9 am Saturday and we didn't have to pay anything additional to make the changes.  

Poor Yaya.  She seemed to be in more pain with every hour that went on.  Occasionally the medicine she was getting intravenously would help her to relax, but she dealt with more than her fair share of misery.  After being admitted and settling in to our room, my parents left having agreed to pick Nellie up from the airport the next day.  Becca was a trooper and took Tutt and Lulu home to sleep in their own beds and stayed the night with them.  

As I lay on the couch in Yaya's room, I finally felt the emotions of the day catch up with me.  I was exhausted and worried.  I wanted to cry, to sob deeply, but couldn't let anything out.  Yaya was there behind me.  She had been so brave through what she called "the worstest day ever," and the least I could do was be stoic for her.  I was relieved that Nellie was coming the next day.  I was so grateful for the love that had been manifest by so many in so short a time frame.  Instead, I fell asleep.  

We woke up during the night once in a while.  Around 7:30 we had another doctor come by.  His words were a relief as he told me the spot on her liver didn't manifest in the way that liver cancer typically manifests.  He gave me a lot of reasons why things were probably going to be okay.  I wasn't sure what all of it meant, but I could read from his body language that he was confident she would be alright and that was good enough for me.  

Nellie showed up around 9:15 and Yaya was instantly more at ease.  She cuddled with her mom and they fell asleep together.  It touched my heart seeing these two beautiful ladies who meant so much to me taking comfort being together.  

I Love This Picture

Most of the day seemed to be consumed by waiting and dealing with Yaya's pain.  She didn't want to walk anywhere, it hurt to walk.  She didn't get to eat anything the first half of the day and she was so frustrated by that.  Again, I was shocked when the doctor came by to tell us they were going to put her on antibiotics and reassess on Monday.  I was hoping we'd be home by Saturday night, but that was not going to happen.  Who knows when we get to have her home with us again?  

I'm at home right now on Saturday night writing up this summary of what has been a long 36 hours.  I am exhausted and drained emotionally.  I am optimistic that all will be well with Yaya.  I am grateful for the good that is in the world.  I am humbled by all the calls, texts, Facebook and Twitter messages we have received.  If you read this far into the entry, I am sorry for such a boring blow-by-blow.  I actually did leave some things out, believe it or not.  My testimony of the family has grown through this experience.  We could not do this on our own.  Thanks to all of you who have helped us.  Thanks to all of you who have been praying for Yaya.  You are amazing.  

We'll keep you posted.  

Anyone Can Fix A Broken TV

Alright, I'm not sure it's honest to title the post "Anyone Can Fix A Broken TV," but it's a nice thing to say.  A little while ago our TV decided it didn't really want to work anymore.  It started over a year ago with the TV having to be turned on twice on occasion because the screen wouldn't fire up, it would just go black.

A month before it died it started turning on without the sound some of the time.  Tutt (my oldest and favorite son) would get frustrated trying to get the sound to play for Mario Kart, on-off-on-off, wait a minute on-off-on and wallah.

We knew we were coming to the end of the life of our TV, when the moment arrived we weren't really prepared.  It was early in the morning, the time when Tutt, Birdie, and Lulu arise from their slumber to catch the first rays of Netflix fun.  Tutt came and informed me that our friend was no longer with us.  

I was devastated.  Not because I love the TV that much, but mainly because college football season IS coming up, and I don't think I could do without the device during this crucial period.  Further, I didn't really feel like ponying up the cash to purchase a new TV seeing as our old one was still a 1080p dream machine.

I did what any reasonable person would do: I googled how to fix (insert TV make and model here).  I found some answers.  First some message boards about how the problem were probably some blown capacitors (the tech people like to call them "caps," which actually makes them sound less cool.  The word capacitor reminds me of the flux capacitor from my favorite movie of all time "Back to the Future," so I was even more excited to try to fix my problem). Next, I found some awesome guy on YouTube who made a twenty minute plus video about how he fixed his Olevia TV.  I liked him a lot, especially after he thought the fix hadn't worked and admitted to having said some choice words.  Not that I think that's a good thing, just made him seem like a real guy.

Having done some brief research, I got on Amazon and purchased replacement capacitors  at a cost of about $16, which were sold in kits by the make of TV.  I waited in anticipation for the new parts to arrive.  When the kit arrived it was all packaged neatly in a small ziplock bag--I was ready to go.  

First I removed the power supply from the TV, this required removing a billion or so screws and carefully pulling apart the back to get to the power supply.  It looks like this: 

Next I removed more screws until I exposed all of my capacitors that were bad.  It was pretty easy to tell which ones had gone bad as they were bulging like a can of peaches that has gone seriously wrong.  

This is a picture of some of the bad caps...if you see the silver ends they all have a bulge to them.  This is where the fun begins.  I haven't used a soldering gun since my awesome cub scout leader taught us how to make a basic light switch by soldering a couple of joints together.  Having watched some soldering tutorials on YouTube (where else?), I first removed the bad caps and then soldered the new ones in.  In all, I replaced 6 or 7 bad capacitors in less than an hour.  

Then came the moment of truth.  I gathered all the pieces of the television set and began to reassemble them.  I put the power supply back in, added a bunch of screws back, and reattached the stand and speakers.  When I was finished it looked the exact same, except for the few screws that I couldn't remember their original placement.  

After plugging the TV in and saying a prayer in my heart I pushed the power button and...nothing.  Then I remembered that my TV always takes 10 second to turn on anyway.  By then, the TV had fired up and was good as new!

I was so excited that it had worked.  A big part of me thought that this would be a waste of time.  I'm glad that I had access to the information to fix it.  I'm sure I made some mistakes that someone with actual training would not have made, but: I didn't get electrocuted, and it works.

So, I'm pretty sure anyone can fix a TV with the problem that ours had, if they are silly enough to attempt it.