Tuesday, June 19, 2018

Kendra’s ER Visit

   I had back surgery 3 weeks ago to fix my VEPTR/Rod that had broken. On Sunday night I started having back pain and only got 2 hours of sleep. When I woke up (from the 2 hours of sleep) I was in the worst pain. Worse then when I broke my rod. So my mom hurried and got me an X-ray to see if my rod broke again. After we saw the X-ray we knew it wasn’t the problem. 
   So for the rest of the day i was just laying in bed and didn’t really have an appetite. We had a little suspicion that it was an infection but kind of just pushed that theory aside because we didn’t want it to be that. We had taken my temperature and it had been normal until around 8:30 pm yesterday when I got a headache. I don’t usually get headaches so I took my temperature and it was 102.9. So I told my parents and we decided that we didn’t want to risk anything so we went to the ER.
    We got to the ER around 9 and usually when we go to the ER it takes 8+ hours to be admitted but yesterday they were really fast. I was able to be admitted in 5 hours. They drew blood and had to try for an IV twice. We didn’t see any abscess forming until after they did IV antibiotics. And it was huge. I don’t think we would have saw it for a while if we didn’t go into the ER. 
   When I was admitted it was 2am and my mom and I were exhausted. I got little 10 minute naps in the ER but my mom didn’t sleep at all. So when I got to my room my mom helped me out with getting situated into bed then left and got home around 3:30am. Now the most recent update is that they are going to have to operate to clean it out. I am actually glad because we caught it on time because it could be so much worse. Wish me luck!

Monday, June 11, 2018

Post Surgeries Update + Birthdays

Jake after his surgery

   It has been a little hectic for the Herrin family for the past few weeks. First update about Jake, he is doing great. He went back to work two weeks after his surgery. He is no longer in pain but he doesn't have a lot of energy and isn't able or allowed to lift heavy things. He has still been a huge help even though he can't do a lot.

Kendra at girls camp
   


   Next up is Kendra, her rod broke on the 21st of May. She had surgery to get it fixed on the 29th. That went really well because a week and half later she went to their church girls camp for a few days. She had lots of fun and wasn't in very much pain. She was able to stay the entire time.

   

Maliyah after getting her dialysis catheter out
   Maliyah's update is pretty long because she has the most healing to do. Last week on Sunday Maliyah came home. She was glad to be home even though she had a giant tube coming out of her bladder that was causing her pain. She really hates the hospital so she would rather be on an uncomfortable couch then be in that depressing place. On Wednesday she went back to the hospital with stomach pain and ended up staying the night so that they could make her feel better. She was having a really hard time with just being there. After being there so long it makes her feel like she will never leave, even if she knows it's only for the night. After she got home she was okay. She had her next appointment today (June 11th) where she got her dialysis catheter and foley out. She is really excited to start swimming and taking baths again!

On Sunday It was Justin and Austin's lucky 13th birthday. We ate cake yesterday and went to IHOP (Or should i say IHOB? ;) ) today.




Saturday, May 26, 2018

Maliyah's Kidney Transplant


Before Transplant

Several weeks ago, we announced Maliyah was officially having a kidney transplant.  Though it has kept many of you in suspense, we are very happy to announce the kidney transplant has not only happened already, but that it went far better than we could have ever expected!

To preface, this kidney transplant holds particular importance because surgeons knew it would be Maliyah's last one-- only two kidneys can fit in a person's body, and this transplant would fill the last available spot.  In other words, this was Maliyah's last chance.  A kidney failure now would leave no other option-- you can imagine everybody's yearning that everything would go well.  Additionally, the length of the surgery would probably require Maliyah to have a breathing tube afterwards, a situation that makes recovery uncomfortable and speaking impossible.

Maliyah was admitted to the hospital the night before the surgery (May 23rd) so she could be monitored and started on important medicines.  Our friend Anabelle and her sister, Katelyn, came up to Primary Children's so Katelyn could braid Maliyah's hair.  That night, our Grandpa came up and stayed with Maliyah overnight.

Before Transplant
In the morning, Mom got a little anxious and accidentally left Kendra at the house since she was in such a rush to comfort Maliyah before surgery.  (Don't worry, Kendra got a ride from Grandma later)  Our friend Anabelle, our mom's parents, and our dad's mom all came up in the morning before the surgery.  Anabelle and Kendra stayed all day while Maliyah was in surgery.  The surgery was originally scheduled to start about 9 am and to end around 9 pm.  Before then, everybody talked quietly in Maliyah's hospital room and prayed for everything to go well.

Promptly on schedule, Maliyah was wheeled back for surgery around 8:20 am on May 24th.  Saying goodbye to Maliyah before surgery was difficult for everybody, and everyone cried.  We knew the surgeons would do well, though.  After that, everybody except Maliyah went to the waiting room expecting news.

At 9:20, surgeons made the first incision.  Around this same time, Anabelle and Kendra went to orthopaedics for Kendra's appointment.  Kendra's back had been bothering her since the beginning of the week, and she needed an X-ray.  The X-ray revealed Kendra had broken the rod in her back, though not too severely.  She goes in for surgery next week.

While Anabelle and Kendra were scheduling her surgery and picking up medicine from the pharmacy, everybody else received the news that the kidney was just walked over from the donor, and the arteries and veins all looked perfect for Maliyah.  Soon after, at eleven in the morning, everybody received the astonishing and absolutely wonderful news that surgeons were able to remove Maliyah's old transplant and reconnect the new kidney in the same place.  This means Maliyah has another chance-- that there was no ultimatum or shortage of options for the future.  The fact they were able to reconnect it in the same place was a genuine miracle.  Our grandparents left the hospital around this time.

Maliyah Recovering
Further, at 1 pm, surgeons announced the surgery was going much more quickly than originally estimated, and that Maliyah would not need a breathing tube.  Following that news, everybody found out Maliyah's intestines were scarred together in a way that made it so they would "wake up" more quickly after the surgery.  She would not have to go for quite so long without eating and drinking.  One of the main surgeons, Dr. Cartwright, drew a diagram for everybody of the surgery up until that point.

At 4:30, surgeons informed everyone the surgery could not have gone better, and that it would only be about 10 minutes before they started to close her up, an hour before she was out of the operating room, and two hours until she was awake and able to see everybody.  At 5:48, she was officially closed up, and at 6:20 we received the surprising call that Maliyah was already wide awake and even asking for everybody to come see her.  Everybody quite literally ran to the recovery room, where Maliyah was in a lot of pain, but okay.

Yesterday, Friday, was a difficult day for Maliyah in terms of pain.  Although recovery will be long, we are so thankful for the opportunities this new kidney will give Maliyah.  She will be able to have the foods she missed (particularly chocolate milk), have an extra 9-12 hours every week without dialysis, and even be able to swim again!  Thank you all for your support on this journey with us.

Love,
Kendra & Maliyah
~The Herrin Twins~

Tuesday, April 10, 2018

THE BIG NEWS!

Yes, it's official.  Maliyah is receiving a kidney this summer!  This journey began on February 26, 2002, when we were born conjoined and sharing one kidney. Thankfully, our mom (Erin) was able to donate her kidney to Maliyah when Kendra got the shared one at separation.

But as many of you know, Maliyah's road to complete recovery hasn't been quite as simple as that first transplant.  For several years, our mom's kidney did well.  Slowly, the lab results started to look less promising.  It was determined the kidney was in T-Cell Rejection.  The initial treatments didn't work, but finally a treatment known as IVIG allowed gradual improvement.  Soon after, in March of 2016, Maliyah had a heart surgery which did not go as planned, puncturing her heart.

The stress on the rest of her body as her heart struggled led to complete kidney failure.  Two years of waiting on the kidney registry and repetitious dialysis treatments have followed.  For two years, our family has waited for Maliyah's kidney.

On April 2, just last Monday, we received the news.  Maliyah is getting her kidney this summer*, and we could not be more thrilled.

There are thousands more on the registry for an organ donation though, and many of them have not yet received a donor.  Maliyah's kidney will change our lives so much-- you, too, are capable of making this kind of change in somebody else's life.  Organ donation influences so much more than the person who is receiving the actual transplant.  Because somebody decided to give, Maliyah has been given the gift of life and energy, and each of our family members and friends are forever thankful.

"I feel like I will be free," Maliyah said after receiving the news.  "I will be able to be with my friends and family without dialysis being in the way.  I will get to swim, and I'll have more energy!"

Thank all of you for your support during our journey over the last two years and also during the last sixteen years.  Our hearts are full as we share this news with you, our biggest cheerleaders.  Here's to this triumph, and to many more to come!

As always, we hope you will continue to stick with us over the next few months as we tell our story.
Love,
Kendra & Maliyah
~The Herrin Twins~


 *We do not want to be contacted by news stations or other organizations regarding this topic.  We would like to maintain the privacy of the donor throughout this process.

Monday, April 9, 2018

Spring Break + BIG NEWS

Spring break was this past week!  We had so much fun together this week, and received some AMAZING news (see bottom of post).  

Fish at the Aquarium
Maliyah's Manicure
We went to an interactive aquarium as part of our break.  Maliyah even had a fish manicure there, where garra rufa fish smooth out a person's hands.  We got to feed exotic tropical birds as we sat in their enclosure, feed stingrays, and look at dozens of incredible marine species.  It was definitely one of the highlights of the break!

We also went to the recreation center with a couple of our friends and swam in the pool.  We used diving flippers to swim extra fast and raced on a floating obstacle course, then relaxed in the hot tub for a while.  Later, we dried off and ate a few snacks.

Feeding Birds at the Aquarium
At the beginning of the week, we got a bit of a scare when one of our best friends, Anabelle, was in a rollover car accident.  We are so thankful she and her family are all okay.  (See pictures below)
We went to dialysis with Anabelle on Friday, which was fun!  We played a few board games and built an elaborate castle with kinetic sand while we were there.  Our family went to the temple and did service a few hours later, which was a really rewarding and fulfilling experience.  Helping others is always a great way to feel happy!

On Friday night, we went to IHOP for dinner.  Later that night, two of Courtney's friends came over with their babies.  All three babies were under 4.5 months old-- we were in heaven with all the adorable babies! 

THE BIG ANNOUNCEMENT will be released tomorrow at 4 pm (Mountain Time Zone) on this blog.  Be sure to watch for it!  We are beyond thrilled to share this news with you!
Until Tomorrow,
Kendra & Maliyah
~The Herrin Twins~

Tuesday, March 27, 2018

Frequent Surgery

We have each had around 100 surgeries in our lifetime.  This past Tuesday, Maliyah just had her biannual back surgery (Click here for a back surgery recap from 18 months ago).  Since our separation, we have both had them every six months, but Kendra probably won't have to have another one unless something goes wrong with her VEPTR (Vertical Expandable Prosthetic Titanium Rib, a titanium rod that runs the length of our spines).
For us, surgery isn't everyday, but it is a routine which influences our overall lifestyle.  We want to share with you our experience with surgery and answer any questions you might have.
Kendra Before Surgery
Frequency: To preface, we usually have surgery about once every sixth months, but sometimes we need it more often for different things.  The reason behind our repeating surgeries is that our bodies need a little more help since they aren't like everybody else's.
What is frequent surgery like: We have had surgery often, but it is still exhausting every time.  Of course, pain is to be expected, but it is hard to remember how bad the pain truly is.  It can be difficult to get a good night's rest after surgery because the pain wakes us up.
Leading up to Surgery: Neither of us look forward to surgery.  One of Kendra's biggest fears is not waking up from surgery.  For both of us, the pain is something to dread.
Hospital Staff: The Hospital Staff is amazing and always takes great care of us.  A question that we have been asked is if everybody knows who we are when we walk into the hospital.  Surprisingly, not many know us well.  That being said, a few have had us as patients throughout the years and are able to recognize us quickly.
After Surgery: For larger surgeries, we stay at the hospital for a few days to a week.  For VEPTR expansions, we usually go home the same day unless the entire VEPTR is changed.  If that's the case, we usually only stay overnight.
Recovery Time: There is a pretty significant difference in our recovery times.  For Maliyah, it only takes about a week to a week and a half, even with a larger surgery.  For Kendra, feeling fully better can take anywhere between three weeks to a couple months.  This, of course, is because we are different people with unique preferences and pain tolerance.
Recovery Quality: Again, our experiences differ when it comes to how difficult surgery and recovery is for us.  For Maliyah, it has become easier as time has gone on.  For Kendra, the repetition and long recoveries have been difficult.  When she was little, just two weeks after separation she was jumping on the bed, but now it isn't easy just to get out of bed two weeks after surgery.

Maliyah After Surgery
We hope this post helped you understand more about our experiences and what frequent surgery is like.  If you or a family member happens to be going into a surgery within the next few weeks, don't worry too much!  It definitely isn't easy, and recovery can be gradual, but it is absolutely possible.  Ask any questions we missed by commenting here or on Facebook. 
Watch out tomorrow for a video featuring Kendra, pastry chef to be, decorating a cake!
Thanks for Reading,
Kendra & Maliyah
~The Herrin Twins~








Monday, March 12, 2018

Disneyland Magic!


We haven't been on a family vacation in over two years.  But this past week, we had the chance to visit Disneyland!

Dad, Courtney, Kendra, Austin, Justin, and Ezra went in the car all the way to California, while Maliyah and Mom flew down after dialysis last Friday morning.  Saturday, when we had recovered from our trip there, we visited the nearest mall and ate at Buffalo Wild Wings.  Austin ate ghost pepper hot sauce while we were there!

Walt Disney's Star
The next day, we went to Los Angeles and visited Griffith's observatory.  There, we took pictures and looked through a truly enormous telescope.  Later in the afternoon, we walked on Sunset Boulevard and saw Walt Disney's star.  Since the Oscars were going on that day, the rest of the street was closed.  On our way back, we stopped to see the Menendez brothers' house, which is the spooky site of a murder in the 1980s. 
On Monday, Maliyah had to go to dialysis in the morning.  While she did that, everybody had the chance to swim in the pool.  Later that day, we all got ready for Disneyland by visiting downtown Disney and getting Mickey ears and t-shirts.  Later that night, we went to the pool with Ezra.  It was his first time in a pool, and he absolutely loved it!
Maliyah Ready for Disney!
Kendra with Minnie Ears!
On Tuesday, we arrived in Disneyland.  That day was full of bad luck, but was still fun.  On the bright side, we rode all of the rides and stuffed ourselves with food.  Maliyah's favorite ride from the whole trip was Monsters, Inc. in Disneyland.  Mixed in with the happiness of the day, though, were a few rough spots.  When we went on the Indiana Jones ride in the morning, the bouncing and bumpiness of the ride led Maliyah to bruise her chin and bump her chest.  As we were walking out of the park later, Maliyah ran over Courtney's foot with her scooter and it wouldn't stop bleeding.  When we finally got Courtney and everybody else to the car, it wouldn't start and park security had to jump it.  We found out later we need an entirely new battery.
Ezra bonding with Sulley
When we tried to start the car the next day, the radiator started to steam, but luckily we made it to Disney California Adventure.  Kendra's favorite ride was Radiator Spring Racers.  We went with Justin and Ezra to meet Sulley from Monsters, Inc. while everybody else was waiting for a ride we didn't want to go on.  Ezra loved Sulley's fluffy, soft fur.
Maliyah, Justin, and Ezra with Sulley
Thursday, we swam all day and had pizza for dinner.  We visited a small island on Friday, got ice cream, and walked along the beach.  Saturday, we went to the mall and got some souvenirs for a few of our relatives.  We also spent some time just browsing through stores.  On Sunday, we all squeezed into the car for the long drive home.
Even though we didn't have any videos or blog posts this past week, be sure to look out for a new video on Wednesday on our channel and a new blog post next week!  Feel free to ask us any questions or leave comments below.
Thanks for all your support,
Kendra & Maliyah
~The Herrin Twins~