Tuesday, December 27, 2016

Primary Children's Hospital has been so good to us this year!  With every surgery, we have been blown away at the generosity & gifts we've received.  They have managed to make a miserable experience very positive.  After our first hospital stay, we decided that we wanted to pay it forward so we have spent the year gathering and collecting items to donate to other children in hopes of making their time at Primary's a little bit more pleasant also.  We are extremely grateful for the donations we've received, we were able to collect more than we ever imagined.  As a family, we shopped on multiple occasions for items to donate.  Kambri donated some of her own money to the cause.  We loved watching our kids search & decide on what they thought would make someone else happy.  Friends and family members joined our efforts & donated blankets, toys, puzzles, coloring books and much more and we are grateful.  This afternoon we were able to deliver two heaping wagons full of surprises in hopes to brighten someone else's day.

Kambri had a pre-op & hearing test with Dr. Shelton at the University of Utah hospital this afternoon.  We've become quite familiar with PMCH & Dr. Muntz so it is a little scary exploring new territory again.  We spent most of our appointment with the resident doctor, Dr. Cox.  He answered our questions and explained the details of what to expect.  Dr. Shelton joined us briefly too, once again explaining the procedure along with the risks.  Ready or not, the time has come once again.

Fasting is usually one of the things that she stresses about most so we took her to Costa Vida (her favorite!) for dinner on the way home.  She finished what she could at the restaurant and then polished it off before bed.

We are grateful for the countless acts of service on our behalf.  We are grateful for my mom & sister who are juggling our boys so that we can be where we need to be.  We are grateful for Jared's co-worker and his wife who gave Kambri a good luck gift along with a surprise for each of our boys.  We are grateful for the messages of encouragement and prayers offered.  Thank you!!

Primary Children's Hospital Fundraiser

As a family we are collecting coloring books, toys, blankets, books, puzzles, craft kits and more to donate to the children at Primary Children's Hospital.  If you would like to join us in this effort by donating items or making a cash donation for the purchase of these items, please let us know!  All items will be delivered on December 28th, the day of Kambri's last surgery!  THANK YOU!

To make a donation contact: 

Stephanie (435)760-5065

strawn05@hotmail.com 

Wednesday, November 16, 2016

It's been a little while so I think it's time for an update.  We are enjoying a little break from the life of surgery.  We have about a month and a half before we hit it hard once again.  This will be the last and final reconstruction surgery and the most exciting, they will restore hearing & the ear should function after this one!  We are excited for that!

In addition to Microtia-Atresia, Kambri has hemifacial microsomia which means that the right side of her face is underdeveloped and does not grow normally.  We've known that this could cause problems for her jaw since she was a baby.  Our dentist keeps a close eye on her and at our last appointment recommended that we see a specialist.  This week we met with him and he confirmed that surgery is not necessary at this point.  Although it does veer to the right, the jaw seems to be lining up and functioning properly.  We were grateful for good news!

{you can see that the right (appears on the left in the picture) joint is deformed and significantly smaller than the other side.  They will probably do surgery when she is about 15 years old to correct this}

When they removed the skin tag on her cheek, it caused her cute little cheek to cave in.  Because of development, that side of her face has always been smaller but removing the skin tag has made it more noticeable.  The skin tag held more substance than we realized.  We are exploring options to fix that which may mean another surgery in the near(ish) future.

We continue to be blown away by her positive attitude and courage to conquer hard things! 

{Photo Credit: Stacey Hansen Photography}

Tuesday, August 16, 2016 - Surgery #5

We kicked off our summer with a surgery & we're ending our summer with another.

About a week or so before each surgery Kambri develops a nervous lick of her lips leaving her with sores around her mouth.  At first we thought it was just a coincidence but after 5 times we've decided it's caused by the stress leading up to the surgery.  She always gets emotional the night before surgery & then super silly the morning of.  This year has been a lot for her to process and we are proud of how well she handles it.  When we started this process we worried that it would become a fight but she has been a delight & we've been amazed at her courage.

We had to check-in at 8 am this time which made for an early morning.  We prefer early mornings instead of a whole day of fasting though.

My heart always sinks as they explain the risks & we sign document after document of consent. 

This is the last surgery to be performed by Dr. Muntz.  We have grown to love him & are extremely grateful for all that he has done for this little lady.  We had a great consultation with him before surgery.  He has such a fun personality and always makes us laugh.

She headed into the OR around 9:40 am.  In some ways this process has become easier but saying goodbye never gets easier.  It's heart-wrenching to watch your little one walk away with the anesthesiologist.  It makes us emotional every single time.

Primary Children's Hospital has been under construction this year.  Every time we go down something is different or moved.  This time we got to be in the new waiting room.  The remodel is coming along & is going to be very nice when all of it is complete.

The wait is always long.  Whether it be the longest surgery or the shortest one, it always seems never-ending.  This surgery was estimated to be an hour & a half long.  We spent most of our time watching the Olympics which was a good distraction.  Just over an hour later we got a phone call from the nurse in the OR asking for permission to take a skin graft from below her belly button.  Not much information was given but we agreed.

A few years ago we pierced Kambri's ears.  Both of them.  Her poor nubin was super painful when they pierced it.  It was infected all of the time & the earring nearly pulled out the side of the lobe so we ended up taking it out and let the hole grow in.  At our last appointment with Dr. Muntz I asked if he had ever pierced ears, which he had, so I requested that they re-pierce it during surgery & he agreed.  

Dr. Muntz came in about 11:30 to tell us that surgery was complete.  This surgery was an extra one to fix the placement of the ear because it sat too far forward.  He explained that it had been a little more involved than he expected.  He was hoping to rotate the ear back 25 degrees but was only able to rotate it about 10 degrees.  He was able to touch up a couple of things on the ear lobe & behind the ear, which is why they needed the skin graft.

The wait after meeting with the surgeon before we get to see her is always the longest wait of all.  Finally they called us back to PACU to see her as she was waking up.  She was alert when we got there & seemed to be doing well.  She was still a little sleepy but she was more responsive than usual.

They kept us in PACU for a while because she still had quite a bit of bleeding they were concerned about.  It wasn't long before she started throwing up.  They tried to give her some anti-nauseous medicine but her IV was giving them fits.  They decided to move us to Post-Op & continue to watch her.  

She continued to throw up & got extremely sleepy to the point it was hard to wake her.  The bleeding was slowing down but continued.  Dr. Muntz doesn't usually come to post-op but he popped in to check things out.  After a couple of hours the bleeding finally slowed down & she quit throwing up so then we just needed to push fluids so we could go home.

After 5 hours in recovery we finally got to checkout.  We tease that we jinxed ourselves because we thought we were going to get out of there at a descent time but the day proved to be long & quite miserable.

We got home just a few minutes before Grandma & Grandpa Larsen brought the boys home along with dinner and ice cream.  My sister & her cute kids had left a balloon and some other surprises.  Our neighbors popped in with fresh baked cookies.  We are surrounded by the best of the best.

We go back down next week to get the bolster & stitches removed, then she gets a little break!  She only has one more surgery.  It is scheduled for December 28th.  Dr. Clough Shelton will reconstruct the inner ear & restore hearing!  We are so proud of this little girl & can't wait to see what the future holds for her.

BEFORE (left) * AFTER (right)

Pre-Stage 5 Photoshoot

Photo Credit: Staceyhansenphotography.com 

Tuesday, June 7, 2016 - Surgery #4

Surgery #4!  It's been a long year yet at the same time I feel like time is flying by.  I can't believe we are this far in the process already.

They always make sure she has plenty to do to keep her occupied while we wait.  She made her third doll who she lovingly named Blue.  She also got a new puzzle and made a cute jellyfish craft.  She's getting braver about talking to the doctors and nurses and seems to be coming out of her shell a little bit which is fun to watch.

She chose strawberry flavored anesthesia again this time.  I was so impressed with the anesthesiologist when he sat down to help her finish her puzzle before taking her into the operating room.  I love that he didn't rush her.  A good doctor indeed.

The wait is always long for Jared and I.  Dr. Muntz always comes to give us the report as soon as they are finished.  He confirmed that everything went well and exactly as planned.  The few minutes (probably only 15-30 minutes) after we see him is always the longest of the wait.  They won't take us into the post-op until she is starting to wake up.  She always has a hard time waking up, it really knocks her out.  The nurse waited with her for a long time and couldn't even get her to stir so she called us in and the minute we started talking she finally opened her eyes.  Without missing a beat she requested a slushie & a snack so we could go home.  She always wakes up pleasant.  In the beginning we planned to video her after each surgery in hopes of getting some funny footage but we quickly learned that she doesn't have much to say as it wears off.  Her number one concern is always food both before and after surgery.  She's done a lot of fasting this year and that's hard for her little tummy.  She's sure she's withering away. 

IN POST-OP:

IN RECOVERY:

She always loves the wheelchair ride to the car.  She got a little nauseous on the ride home but quickly fell asleep.  She is doing quite well this evening.

They took cartilage from her left ear to form the bump in front of what will be the ear canal.  They also fixed the bump on her cheek since she picked the stitches last time.  This was one of the easier surgeries so we are hoping for an easier recovery as well so we can enjoy our summer!

BEFORE:

AFTER: