Monday, March 18, 2013


It has been awhile since I have given an update on sweet Abb.  Home has been wonderful and anything back to "normal" the best medicine for her. 

February 8 - Abb was able to go to Tyler's basketball game.  We just sat up in the top bleachers and she and I wore a mask.   One of us will usually wear a mask with her just so it makes it a little easier on her.  I just wish people wouldn't stare or say comments, it doesn't help!  It was so cute Ty's whole team when they were in the huddle before the game started turned and waved up at Abbey.  Of course I got a tear in my eye! 
February 9 - We headed in to Logan to meet with a florist about Alyssa's wedding.  We had planned that Abb would just wear a mask so that she could be a part of the planning.  As we pulled into the parking lot, Abb turned to me and said mom I can't go in they have fresh flowers.  I had totally forgot, that is one of the things that she can't be around is fresh flowers because of the standing water that can harbor bacteria.  It was so sad she had to sit in the car and face time us on our phones so that she could see what we were doing.  Another restriction is fresh fruit and vegetable.  Because of the risk of bacteria only those things that can be thoroughly cleaned on the outside and peeled are okay for her to eat.  She is craving a lettuce salad and she won't be able to have that for awhile yet. 
February 10 - We were just trying to decide how we would juggle the church schedule and who would go to what meetings.  Randy and I had went downstairs and Liss and Abb were in Abb's room.  Liss said that she could tell something just wasn't quite right when she asked Abb if she wanted to play Just Dance and she said no.  Liss yelled mom come here Abb said she doesn't feel good.  I can't even explain how my heart dropped.  As I asked her what was wrong she said that it was hard to breathe and it hurt in her chest.  Randy was immediately on the phone with PCMC.  As Abb heard this she started to cry and kept saying I don't want to go back to the hospital. She was also itching a little but I didn't think much of that because she has dry skin but it seemed to intensify.  We were told to take her to the ER.  We headed for Logan but in my mind I just wanted to keep going to PCMC.  As we drove and Liss held her in the back seat she started to complain about her lips and hands swelling.  So then it seemed like an allergic reaction.  As we pulled up to the ER, we tried to plan out how to keep her away from as many people in there as possible.  It was decided Randy would go in first and bring out a wheelchair (sterilized) of course!  We went right back to a room and we immediately went into lock down mode!  Randy stood guard at the door and told everyone we wanted them to gown and mask and glove before going in.  Randy coordinated the calls between PCMC liver team and the ER doctors and I gave them a rundown of her current medications.  We racked our brains trying to think if we had done anything different; food, laundry detergent. Nothing stood out.  She had never had an allergic reaction to anything before.  They quickly gave her a dose of steroids and benadryl and a bag of fluids through her pic line.  Her itching had intensified and made a few hives but they said what ever you do don't itch and make an open sore.  They drew a set of labs and nothing had changed from our lab draw on Thursday which made us all feel relieved.  She stabilized and now we just wanted to get out of there as quickly as possible.  We made it home and we changed all the bedding and blankets and started a log of food.  I fixed chicken alfredo for dinner and then a couple of hours later Abb started to get red around her mouth and chin.  We had a new prescription in case this happened so we gave it to her.  So since then we have not introduced her back to alfredo sauce or swiss cheese and so far so good!  We only had a few minutes before sacrament meeting was to start and the next thing I knew Randy was ready to go and said he just really felt like he needed to go.  After he came home he shared with me that he had bore his testimony and after was just sitting there and all of the sudden he had a warm feeling come over him and an impression that said she has a beautiful liver.  These were the words that the surgeon had said to us after Abb's second surgery.  We both felt like it was a prompting of reassurance from our Heavenly Father to us.  We have reflected on this and felt great comfort in that fact that we can all receive revelation and comfort.
February 11 - This was going to be a girls only trip down to Clinic but we all felt after what had happened Sunday that he needed to go.  Randy says that he could have stayed home but I really don't think he could have.  Liss made the comment at Clinic that day that her and I were the ones falling apart at the hospital and Randy was the sane one and now it seemed just the opposite.  I am amazed at how our minds and bodies work under stressful situations.  I know that he lays in bed and is just waiting to hear any movement in Abb's room and he is at the door wondering if everything is alright.  I haven't been able to leave her, I am sleeping on her floor in her room.  Some nights I have to admit I just sit up by the bed and watch her chest rise and fall.  In the hospital you get obsessed with the monitors and following the numbers that it is hard for your mind to find a peaceful place. But I think another tender mercy from our Heavenly Father is that fact that when one of us was struggling it was the other person's time of strength and faith.  At Clinic we spoke with Barbie our social worker about our transitions back to work.  Abb said I'm afraid they will call every five seconds!!  She wasn't far from the truth.  It was nice to have her to help us all set some boundaries because I think that Abb needs to have more space from our questions and inquisitive looks.  Her hematocrit was a little lower so Dr. Jensen felt like she may be having a vitamin deficiency so he ordered labs be drawn at the hospital.  She also had to have the dressing changed on her pic line which has to be done by the IV team.  The easy day at Clinic turned into a very long day and we realized this was our first trip from Richmond. 
February 13 - Today is the day I had been dreading, back to work. I know that I didn't sleep at all between worrying about Abb and contemplating what is on my desk waiting. Liss was off of work that day so at least I was leaving "my baby" in good hands.  I really felt like I was leaving my newborn baby.  Anyway I will admit that I cried most of the way to work.  My co-workers welcomed me back warmly with flowers, a cake, cards and genuine love.  But it was an exhausting day emotionally, I felt like I was reliving Abb's journey over and over.  But as I look back it felt good to have my mind occupied with other things.  Abb didn't call or text me all she obviously had a great time with Liss. 
February 16 -   Today marked 1 month since Abb's surgery to fix her hepatic artery and remove her bile duct.  I went on the Utah Donor Registry and officially made myself an organ, tissue and eye donor!  We also had the Make a Wish Coordinators visit our house.  We were surprised when we were informed in the Hospital that Abb would be able to participate in the Make a Wish program.  We certainly feel like she deserves it!
March 4 - Abb has been working diligently to complete a scrapbook with all of the pictures taken during her journey.  I remember our social worker telling us to document with pictures and a journal.  At first I thought how can I take pictures especially when there were tubes and lines coming in and out of her.  But I did it and I am so glad that I did now.  I think that the pictures have been therapy for her.  She has completed a scrapbook which she was so excited to show at Clinic.  I think she has even shared it with her BFF Maddie.  I know that it was hard for her to look at, but I think Abb realizes this is a part of her.  She also made Dr. Jensen, Sharon and Barbie a parachute bracelet.  Abb's biggest hurdle has been boredom!   We also had to have a visit at U of U Hospital Nephrology Department regarding Abb's kidneys.  Our heads were swimming by the time we had both visits and we had some new concerns.  Right now her kidneys are functioning great but long term with the medication that she is on for liver rejection can cause kidney disease.  Part way through the visit Abb said, so am I going to have to have a kidney transplant?  I felt so sad for her, she has been through so much.  It was enlightening and we are going to be a little more aggressive in getting some of her meds reduced.  We also decided we really didn't like that doctor and have had our records moved to a nephrologist that we saw during our visit that we all felt comfortable with.  I guess this is another thing we have learned, we have to trust our doctors and if we don't feel comfortable do something about it.

March 17 - Abb is now back to school half days and loving it.  I went and spoke with the class the day before to try and help them understand Abb's situation.  I explained to them that just like they have blue eyes or brown hair that is just like Wilson's Disease Abb was just born with it.  She is now cured of it because she has a new liver.  Also if they bump her it's okay.  If she wears a mask it is to protect her from getting sick and not because she can give you something.  A boy in the class who is probably half of Abbey's size raised his hand and said maybe we could be her super powered body guards, it was so sweet.  The class clapped and cheered when I said that Abb was going to come back to class.  I will never forget how that made me feel.  They have also experienced so much through this.  I reflect back on hearing about her little girlfriends sitting on the benches in the lunchroom having a special fast for Abb.  Friday March 8th was her first day back.  She had butterflies and was so excited.  After I dropped her off at class I just stood there I couldn't leave and as I walked to the office I couldn't hold it in anymore.  I just started to cry, it had seemed like such a big goal to get back to school and she had made it! 

To give you an idea of how she is doing.  I don't think if you saw her you would even know the journey she has been through.  She is jump roping, rip sticking, ice skating, jumping on the trampoline and having friends over.  Of course we always check to see if the friend or anyone in their family has been sick.  She is happy, beautiful, sweet, bubbly, busy with projects, kind, resilient and ready to give back. 

Again, we love you all!
The Owen's


Thursday, February 7, 2013


I feel like so many things have happened since the last update and I can't wait to share all of the news with you.  Our trip home for the weekend (February 1-3) was a whirlwind!  

Wednesday January 30th we had an appointment for the staples to be removed and also for an ultrasound.  The appointments started at 12:30 but Abb was told she couldn't eat for 8 hours before this.  We were still doing the IV antibiotics every 6 hours so we decided to make Abb some breakfast around 5:00.  It all sounded like a good plan, but she didn't seem too excited about the breakfast burrito that early.  We just wanted to try and make it easy on her.  It seems like she has had so many times that she couldn't eat for almost the whole day and we wanted to try and ease the hunger pains.  When she had the 42 staples removed they had given her a mild sedative to relax her but I don't think it helped.  The instrument they use to remove the staples looks similar to the one used for a regular paper staple.  This time no medicine, just right to the task at hand 28 staples.  Sharon our nurse was awesome and when Abb needed a pain break she would talk softly to her and rub her arm, she is so cute.  We have fallen in love with Sharon and her fun Australian accent.  Mission accomplished on the staples and the scar and drain incisions are healing well.  I had mentioned her scar to my hairdresser and said I felt sad about it and she said think of it as beautiful, that scar saved her life!  
Now we were on to the ultrasound.  After her second surgery an ultrasound was given each day for 4 days after to make sure no blood was pooling anywhere and that the flow through the hepatic artery was steady.  So this definitely was not our first ultrasound experience probably closer to our tenth.  That being said it doesn't make it any easier.  You think should I look at the machine and try to understand what they are looking at or just sit and listen to the clicking and whooshing sounds as they take the pictures.  I can't look at the screen because my mind makes up all sorts of things, Randy has tried to ask questions but the technicians really don't want to make any judgments.  So what usually happens is we both sit there and then Randy will get up and go walk the hall and come back in and then I will leave and do the same.  This last one I think we were just so frazzled from the anxiety that we felt caged in that room.  We don't want Abb to worry so we just say we are going for a drink or to stretch our legs.  We have to convey on the outside, our face and demeanor to her that everything is good and we are not worried when we are in complete knots in our stomachs.  Then the waiting, always waiting and then the radiologist comes in. Most people recognize us now and they all love Abb and want to catch up on what has happened.  Finally she says everything looks great.  Such a flood of relief, if I could I would have just sat on the floor and cried and cried.  My emotions are so close to the surface all of the time.
We were given the word to stop the IV antibiotic that we had now been giving Abb every 6 hours for the last month!  We all thought finally a full night sleep and then we will leave for home for the weekend!
We were up and ready to leave by about 10:00.  We had to wait for Randy because he was in the Ronald McDonald House community kitchen making tortillas!!! He has made friends with several Hispanic people that are staying there and also that work there and they have been teaching him how to make homemade corn tortillas.  He has loved it and now he is always talking in Spanish to me and Abb!  They even took a picture of the group making the tortillas and put it on the Ronald McDonald website. Maybe Randy will set up a little taco stand at our house this summer :). 
Abb went right to her room closed the door and started to organize and put away the things we had brought home from the apartment.  I think the door closing meant she wanted some alone time without her parents staring at her.  I thought I would tackle the mail.  What a sinking feeling seeing the stack of medical statements.  
We were both able to go to Ty's game and Liss stayed with Abb and watched a movie.  She said that she was going with Josh when we got back.  We knew that this was the big weekend when he would ask her to marry him.  He had said Saturday night so when we got back and Liss said she had decided just to stay home for the night with Abb we didn't really think anything of it.  We later found out that Josh was all ready to ask her that night.  So when she texted him and said she was just going to hang out with Abb he blew out the candles and took off his tie to try for the next night.  He has been patient....  Liss was invited by Josh and his family to go to Hawaii in December and all of the arrangements had been made.  When Abb got sick she knew that there was no way that she could leave her even though at that time she was doing awesome.  I'm sure that was in the plan to ask her there.  Again I think January was an option but Abb got sick again and had to have the second surgery. Josh and his family have been such a great support.  Josh has been down at the hospital to be with Liss often and his love for her was evident as he held her hand and just sat quietly next to her for hours as she was at Abb's bedside.  Well, Saturday Liss woke up and decided that she wanted to go car shopping.  We thought she can't make a decision in one day so we would go looking with her.  I also noticed her fingernails and asked her if she was going to get them painted today.  I could tell she had just picked off her last manicure.  She said NO!  Well she found a car and so a couple of times I said do you want to have Josh come and look at it.  And Randy had said hypothetically if you and Josh get married will this bill be a problem.  And then she said, until I have a ring on my finger it's my decision.  I had told Abb by now what was going to happen that night and she was bursting.  Well she ended up buying the car and wanted to go surprise Josh.  She did tell him she was coming and so he started to scramble to put his plan in place.  Randy had said to her you will wake up tomorrow and look back on today and it will be one of the best days!  Liss thought it's just a car Dad.  Josh finally pulled it off and she accepted....the big day is April 19th in the Logan Temple.  We are thrilled and it was so cute when Liss asked Abb to be her maid of honor.  Abb said of course and then she whispered to me what does that mean.  I said you have to be her best helper and help her make decisions.  Abb said I can do that I love her so much she is my best friend!

I had received a call from a co-worker's wife, Melanie Buffhman asking about Abb.  After I caught her up she told me the sweetest story about her 12 year old daughter Katie.  Katie is a student at White Pine Middle School and her English teacher had told them the story of the One Thousand Paper Cranes.  The story is of a young 12 year old girl named Sadoko from Nagoya, Japan who in 1955 was hospitalized with leukemia.  Her village sent her a gift of colored cranes.  The gift brightened her and gave her an idea.   She believed in the saying that if you fold a thousand cranes, you will get over your sickness.  Katie had been reading Abbey's blog and decided that she wanted to do this for Abb.  She started folding the origami cranes, and then she even got her brothers involved.  She was able to make nearly 400 herself before her hands couldn't take it anymore.  Melanie contacted the English teacher who asked for the help of her classes and the students would make the cranes and bring them to Katie.  Her mom said that Katie now had over 1,000 cranes and was wondering if they could bring them over.  I was in tears, how touching that a young girl who didn't even know Abbey would take on such a huge  task and would follow through with it.  We were able to meet this remarkable new friend of ours, Katie Sunday when she along with her parent's presented Abbey with the 1,000 cranes.  There was not a dry eye in the room.  We just marveled at it all day.  All of the different colors and sizes and we tried to imagine all of the time and effort put into this.  Thank you sweet Katie we will never forget you or this wonderful gesture to brighten our day and give us a needed lift!

I wish we could have wrapped up in those cranes on the way back to SLC because we were all sad to leave home.  Abb cried most of the way back until she just finally fell asleep.  This was the hardest time to leave, we had a great time at home and there was a sense of normalcy to our life and if felt so good.
Monday was clinic at 1:30 and Abb couldn't wait to tell Dr. Jensen about Liss' engagement and also the story about the One Thousand Paper Cranes.  And I think Dr. Jensen couldn't wait to tell us that everything was looking great and we could be released to go HOME FOR GOOD!!!

I threw my arms in the air and Randy gave a yell! I have never seen a bigger smile on Abbey.  We would have blood draws Tuesday morning and then head for home.
We packed and cleaned and then we said our goodbyes to the Ronald McDonald House that we had been at since December 7th.  If you want to help out this great facility they still accept the pull tab only off of pop cans.  If you want to collect them please do and drop them off at our house and we will deliver them by on one of our upcoming Clinic visits.  

WELCOME HOME!! The best words in the world.  We are settling in and loving everything about being home; eating together as a family, praying all together, just talking and laughing, laundry, cooking, looking out my window at my wonderful neighbors, hearing Abb laugh with her friends on face time, listening for the front door to open after Ty gets home from school, Zac yelling up the stairs to see how his princess is doing, Abb texting Liss wondering when she will be home.  

Team Kenton had a great quote I would like to share from President Eyring.
"I bear you my testimony that the Lord will always prepare a way for you to escape from the trials you will be given if you understand two things.  One is that you need to be on the Lord's errand.  The second thing you need to understand is that the escape will almost never be out of a trial; it will usually be through it.  If you pray to have an experience removed altogether you may not find the way prepared for you.  Instead, you need to pray to find the way of deliverance through it." 

I just want to tell everyone that reads this how much I love and appreciate your concern for our family it has been wonderful.  We couldn't have made it this far without your shoulders to cry on and your arms that we have felt wrapped around us.  Our testimonies and lives have been forever touched and changed.  

Love to you all,
The Owen's 

Wednesday, January 30, 2013

We have had a steady week of improvements in Abbey's health.

 Her diet was advanced from clear liquid to full liquid to mechanical soft (we didn't know there was such a thing either) to a regular diet.  This transition was done to give her digestive system time to adjust to how the small intestine was connected to the liver to act as the bile duct during her last surgery. 

Monday, January 21st, Abb started to really complain of back pain. We tried warm packs, massages, changing positions in the bed, moving to sit in the chair and up walking as much as she could handle.  But there was little relief, so this affected her ability to sleep and relax.  It was also a sad day because Liss had to go back home to work on Tuesday.  She had been there since last Wednesday.  It made everyone cry when she left.  Randy and I finally talked Abb into trying to sleep sitting in the rocking chair they have in the room.  We moved it over by the door because Abb was still connected to a pole for her IV's.  I had somehow got myself trapped by the bed and wall and Randy was sitting on the bed with his foot holding the chair back in a reclined position so it wouldn't rock.  Neither one of us dared to move for fear we would wake her up and it had taken us quite a while to convince her to try it and she was now asleep.  So for a little while I just sat on the floor and then after about an hour I did the army crawl under the sink and behind her chair so that I could move over to the bed.  Randy was still in a half sit-up on the bed holding her chair.  The nurse came in at midnight to do vitals and the door bumped the chair and woke Abb up so it was back to the bed.

Tuesday Abb had an IV in each arm that started to really bother her and had to be removed.  The nurses said that sometimes the veins just get tired from all of the medicines that are pushed through them.  She had to have one of those removed and placed in a different position on her arm.  Abb mentioned today that this week was the start of our 8th week away from home and her and I have only spent 2 nights at home during that time.  I didn't want to say, but I had been thinking the same thing but we just try and say we are one day closer to going home now.  

Sunday my parents, Ty and Zac came down for a visit and we were glad that they were able to briefly see a special family that was our neighbors across the hall, the Reynold Family (Team Kenton).  Sunday was a great day because Kenton was finally able to go home and so many of us lined the halls of the hospital and clapped and cheered and cried as he and his sweet family was able to leave the hospital.  We had been following their story on Facebook and knew the circumstances that he was leaving under, but we were hopeful and excited for the time he would be able to be home.  Today we learned that he had passed away.  Our hearts were so sad and each time we walk out of our room we see his door and think of him.  As you walk around the hospital and look in each room you can't help but realize you are not the only one going through trials.  Every door, every room, every parent you pass in the hall is going through something they didn't think they could handle or should have to do.  Thanks Reynolds Family for touching our lives.

Wednesday we had bothered enough people about Abb's back that they brought in an air pump that would add a support system in the bed.  We also requested physical therapy and they came and was able to give her some exercises to do.  We feel like we are starting to definitely know enough about things to be dangerous.  We question the nurses and ask for a lot of clarifications from the doctors on what is the plan for Abb.  Our only focus no matter what toes we may step on is getting Abb the best care.  The staff has been terrific from those that clean the room to those who deliver her meals.  But we always are a little nervous at nurse change which is 7 in the morning and at night.   The pain pump went away today and now Abb would be on oral pain killers.  This was probably the hardest night, she was crying in pain with no relief.  I climbed in bed with her and Randy propped up pillows against me so that she could lay more comfortably.  Except for my snoring, which I will deny everyone was finally able to get a few hours of sleep.  Abb said she would even move her arm and Dad would jump up and be right over by her wondering if he could do anything.  Today Dr. Meyers who was the surgeon who removed Abbey's liver came by at the request of the surgeon who had done her latest surgery to check on the drains.  It was good to see her, we have not seen her since the transplant and a flood of emotions and feelings came back.  I just kept wiping my eyes.  She removed both of the drains which are just tubes with a ball on the end that any excess fluid or blood from the surgery goes into these.  It is a great step to have those removed.  Barbie, our social worker was also in the room and after Dr. Meyers posed for a picture with Abb we all noticed as she hugged her that she had a tear in her eye.  She said what a journey you have had Abb and I'm glad I was a part of it. 
Thursday Dr. Molly came by who is on call from the liver team and gave us the great news that Abb would be able to be discharged Friday back to Ronald McDonald's.  We were thrilled.  Liss had brought some fleece down to make blankets on Wednesday but Abb just didn't feel good.  She wanted to make one for a girl we had met who had a liver transplant the same night that Abb had her second surgery.  So we worked on this and a card to give her before we were to leave.  She is always trying to think of things she can do for others that are there even though I know her back is still in pain.  All IV's were removed so all she has is her pic line and she was thrilled to be able to put on a shirt with her pajama pants.  I went out and asked our nurse to contact Music Therapy because this has been such a wonderful thing for Abb.  Rebecca who has been there for us each time was able to come up and sing for her.  Friday would be the last day of her internship at PCMC and Abb's last day at the hospital so she said it was a perfect way for her to end her assignment.  She laughed when she saw the life size Taylor Swift in the room and we thought she would have loved to hear us all (Randy) included singing her songs.  I think Randy and I got a little carried away on one song with him on the African drums and me with the shakers......  GREAT DAY!!!

Friday Dr. Molly said to Abb, you are such a brave girl! Now we just had to get the antiobiotics arranged, home health care called to set up lab draws and then we could leave.  The infectious disease team at PCMC had been in contact with us and had cultured the bile duct that was removed and felt like Abb needed to be on an additional antiobiotic.  I am thankful for all the medicine that is available, but it is heartbreaking to see her take so many. It was about 4:00 when we were finally given the go ahead to leave.  And yes as you may imagine we were given some second glances as we carried Taylor back to the car.  We bought a massager, icy hot and used the heating pad but it was still a long night but we have more options for making her comfortable here at Ronald McDonald's.

Saturday there was still more pain so Randy reached out to our neighbor Sharik Peck. We were not able to find the massager he suggested so he offered to come down and help.  What a blessing! I know that the weather was very foggy and this took time away from his family but we appreciated seeing him and Cheryl.  It made us all more homesick to see their familiar faces.  Sharik worked with Abb on some techniques for about an hour.  He is so caring and calming that we all felt better (he even helped Liss with her headache) after his visit.  He was able to help Randy give Abb a priesthood blessing to ask our Heavenly Father to ease her pain and help in her healing.  Thanks Peck's we appreciate your friendship and concern for Abb.

Sunday was a pretty uneventful day.  Randy and I have been overly anxious to put it lightly with Abb.   Each time she even acts like she may not feel well we are asking her.  Well she told us that she promises to tell us if she is not feeling well but we just can't keep staring at her and asking her questions all day long.  We will try........ One mountain we had to climb was Abb's hair.  She had it in a pony tail that was braided the whole hospital visit.  From her moving her head around it had made the biggest rats nest that Liss and I could hardly dare even look at it.  We started the washing process and Liss said that it took her over 2 hours to comb out her hair.  She really thought she would have to call our hairdresser about cutting it out.  I think I know how dreadlocks start.  She looked so good after her hair was fixed.  Liss did a pedicure and manicure on her and just spent time talking with Abb and I know that is the best therapy around.  They sure love each other and Liss has been here through it all.  Randy has mentioned on several occasions, thank goodness for Liss.  We have tried to think of how one of us could leave and go back to work but this has really been something neither one of us could have handled alone.  I am so grateful that we have been able to go through this together. 

Clinic visit on Monday went great.  All of our favorite people were there Dr. Jensen, Sharon and Barbie.  Labs were drawn that morning and everything was going steadily down which is just what they want to happen.  We have an ultrasound scheduled for tomorrow (last one) to compare to the one 2 weeks ago after her surgery.  She will also be getting out the 28 staples, she said it will be a lot better last time there were 42.
We have labs Thursday morning and if everything is fine we will be able to come home for the weekend and return on Sunday.  I hate to even get excited yet, it seems like I do everything with guarded optimism.

Abb is in great spirits and it constantly making lists of the things she can't wait to do when she is back home.  I can't wait to be there to check each thing off with her.

I want to thank the great people that I work with at USDA-ARS.  Many of my responsibilities are being handled by great employees who already have a full load without this added assignment.  They always send their concern and love and it has been comforting to not have this additional worry.  Thanks again!!

Sunday, January 20, 2013

When we decided to name our blog Abbey Owen's Journey I had no idea the road we would travel.  Since the last post we have had a trial of our faith, felt the depths of despair, prayed, fasted, received priesthood blessings, and eventually put our heavy hearts in our Heavenly Father's hands.

We had anticipated our clinic visit on January 11th but it was cancelled due to weather. Abbey really looks forward to these visits and had spent the morning fixing her hair and picking out her outfit. This is really the only place that she goes, so she makes the best of it.  She was sad, so we decided to go for a ride anyway up to the hospital to visit the gift store.  She says up there she doesn't feel strange wearing her mask because other people have theirs on too. 

 She was looking forward to Saturday because Liss was coming with crafts and staying for the weekend.  As soon as Liss arrives, Randy and I become invisible, she loves her sister so much. Knowing this, we knew that something was off that morning.  Abb said she was tired and wanted to get back in bed with me.  She never takes a nap and rarely sleeps in.  Randy immediately called to check on her lab results and found that her hematocrit was low and her liver numbers had climbed significantly. This was almost identical to what had happened the previous weekend.  We were told to immediately bring her back to the hospital. By now Liss had arrived and brought in the greatest thing.  Abb and I thought, what in the world is she carrying in.  It was taller than her and wrapped in plastic garbage bags.  Abb couldn't even guess what it could possibly be and then she just started to laugh. The whole body shaking huge grin type of laugh.  She had unwrapped a life size photo stand-able Taylor Swift!!!  Now they could be inseparable. Thanks Kelleen Smith!! And what's even better as Randy goes back to the apt late at night it scares him every time. Tomorrow she is going to join us in room 4413.

Sunday January 13th they scheduled Abb for another endoscopy and liver biopsy.  The endoscopy showed no blood leakage at the bile duct but they saw mild liver rejection so she was given a large dose  of steroids which is the course of action for this.  Monday after the radiologist and liver team examined it again they all felt there was no rejection but still the ongoing infection she was being treated for. But that didn't solve the question of where she was bleeding and the drops in her hematocrit. She was doing so well they asked if we wanted to be discharged but Randy said no he felt like we needed to stay longer.  Tuesday it was decided that she would have a specialized endoscopy that could go into the bile duct and see if there was a narrowing or other problem.  The scheduling at the University of Utah would take a few days so we were just to wait.  That night Abb complained about her stomach and threw up and again her blood pressure and hematocrit plummeted.  Thank goodness we were still at the hospital.  This time we could also see that she was physically losing blood.  They decided to do a CT scan with contrast to compare to the one completed 9 days prior.

The conclusion was completely heartbreaking.  She would need immediate surgery to remove the aneurysm which had doubled in size on her hepatic artery.  The same surgeon that had performed her transplant along with his clinic partner from the University of Utah would be operating on Abb.  I can't even find words to express how this felt.  To tell Abb what she would have to endure yet again and this time she would experience all of the pain.  She asked "will I have staples again, the drains, a catheter, more IV's, am I going to be okay this time, could I die?" The surgeons came to our area and on the computer showed us the complicated and risky surgery that would have to take place.  As you looked around at the other doctors present you could see the seriousness in each face and also that they were not certain of the outcome.  I just couldn't even be brave, I climbed in Abbey's bed and just held her in my arms and we cried.  She has worn 2 necklaces from the minute she could, one from her Aunt Tami that has a heart with an angel in it and also a necklace a jeweler from Trolley Square gave her after he met us at the Ronald McDonald House.  She got a watch for Christmas and she had that and her Primary Children's bracelet on.  As Liss and I took these off our hearts were breaking, we put her in the gown and I climbed back in the hospital bed for the ride down to surgery.  I just couldn't get out, I still don't know how I was ever able to leave her.  I could see the surgeon looking at us from a distance as we said our good byes.  My parents were also there and her grandpa was able to help Randy give her a priesthood blessing.  As we somehow walked to the waiting room for what they told us could be a surgery longer than her initial liver transplant I think all of our minds were racing and we were trying to have faith not fear.  We were again in the same empty waiting room watching the phones on the counter hoping they would ring with an update, all of us glancing at the clock every few minutes.  Liss and I were given priesthood blessings and we also kneeled many times in prayer to ask our Heavenly Father to look down on Abbey and to direct the hands of the surgeons.  The surgery started at 6:00 pm and we got our first update around 7:15 that she was stable and they had made the incision and was starting.  We received updates in person from our liver doctor who was in the surgery and he would  explain what had been completed.  We would listen for any noise to come down the hall and one of us would jump up as he approached.  None of us had eaten all day and we were constantly saying prayers to ourselves.  We finally received word about 1:30 am that the surgery had been completed and the doctor would be meeting with us soon.  I reminded Liss and Randy that after her liver transplant when he had spoken to us he just told us like it was no sugar coating.  I had prepared myself to just lower my head and plug my ears if I needed to.  As he walked in he had a huge smile on his face.  He said first of all her liver looks beautiful.  There had been concern that they would start looking for another liver for Abb so this was comforting news.  He took a blank paper and started to draw a picture of the procedure that his experienced hands had performed.  He said this was the best surgery he has ever done.  I know that he would not exaggerate.  He removed a piece of hepatic artery and replaced it with a donor vessel and also removed the bile duct and brought a piece of small intestine up to attach to the liver.  We asked him how many times he had performed this type of procedure and he replied "once before, and the patient passed away within 5 minutes of the procedure due to the aneurysm rupturing."  How do you express to someone the thanks you have, as he left we again knelt and thanked our Heavenly Father for the miracle we felt had happened.
Abb was moved to PICU and we were able to see her about 2:30 am and her grandparents who I am sure this set a record for being up this late headed to the motel.   Liss stayed in the room with Abb and Randy and I went to our 4th floor room for a few hours of sleep.  It was so good to see her again.
This road has been hard the last few days since surgery she has had major abdominal surgery and is in pain.  She was able to have the breathing tube removed early Thursday morning and we were quickly moved back to the 4th floor.  She still has not been able to eat anything but ice chips and was glad today to have the Andersen tube removed from her nose which takes the contents from the stomach.  Going into surgery she just had the one pic line but she now had an IV in her neck and two on her right arm and two more added to her left arm.  Those have been removed over the last couple of days leaving just 2 now.  Today after labs was the first time that we kind of took a little breathe, her hematocrit was stable and her liver numbers were declining.  Abb is able to control her pain with a pump which has helped her try and stay ahead of the pain.  
Our only focus and goal now is to help Abb be comfortable and start on her recovery.  We are constantly thinking of the tender mercies even during this difficult week.  If they would have focused on the specialized endoscopy and not done the CT scan they would have never found that the aneurysm had doubled in size.  If we would have left the hospital what could have happened.  We are so blessed that we have been healthy and been able to remain at her side to help her.  
We love Abb so much and this week we felt the magnitude of that love.  We talked about all of the great traits that she has; brave, strong, kind, funny, sweet, nice, pretty, creative, content, artistic, and friendly.  

And even through this additional trial she has endured and never lost her spirit.  


Thanks for everything you all have done and are doing for us.  I don't just say this each time for something so say, we are truly touched and lifted by all of your concern and loving gestures.

The Owen Family

Thursday, January 10, 2013

I have loved sharing our experiences with all of our family and friends and the thoughts of what I wanted to say were never hard to find.  But, after I posted the news of Abbey's setback I just haven't had the heart to give an update. 

Friday we were supposed to do our regular home health care visit with lab draw and then head for wonderful home.  At our clinic visit on Wednesday Abbey had the pic line in her arm removed the LAST thing standing in her way of a shower with nothing covered in plastic to protect from the water.  We were all excited, especially Abb.  She was nervous because now all of her lab draws would be a poke.  We have a routine every morning so that we can have her eat breakfast before the labs and her medicine which has to be taken right at 8 am and 8 pm.  So when she woke up around 5 and said her stomach hurt as I talked to her we decided she was probably a little hungry and nervous and that was what she was feeling.  I gave her a small bowl of cereal and then the nurse was at the door.  As she sat in the chair she said I just don't feel good and the bucket was ready and she threw up.  We called the clinic and they said to try and have her take her rejection medicine and hopefully keep it down for 30 minutes which she was able to do before she threw up again.  She asked to go to the bathroom and as we made it to the bathroom her legs just buckled and she fainted.  The clinic said to quickly bring her in and said it should be by ambulance.  As we arrived at Primary's ER they quickly assessed her and she then threw up again, but it was blood this time.  She was having trouble maintaining her blood pressure and so they quickly put in 2 IV's and it was determined that she would need a blood transfusion.  Her liver numbers went crazy.  The two numbers they track had gone from in the 40's to over 500.  They ordered an ultrasound to try and see if they could locate any source of the blood. I just can't even describe the horrible pit in my stomach, could this really be happening she was doing so well and feeling great.  Had we missed a sign, did we not do something, was we starting all over again?  Complete anguish is the only way to describe it.  And as time went on there was only more questions as to what was going on and what had gone on than there were answers. 
As she rested and we waited for her vital signs to stabilize to move to the intensive care the child life specialist at the hospital asked if there was anything Abb would like and she said is music therapy available and soon Rebecca appeared.  She was the same person who had been there the day we left the hospital and sang Taylor Swift songs to Abb.  She remembered Abbey and started to softly sing all of the Taylor Swift songs she knew.  She even followed us up to the CICU (Cardiac Intensive Care Unit) and continued to sing to Abb for a few more minutes while she got settled there.  The PICU (Primary Intensive Care Unit) was so full of RSV and flu that they thought with Abbey's compromised immune system she would be safer there.  It was determined that Abb would need an endoscopy and also a liver biopsy to help in determining what was going on.  As this day went on I realized that one thing that was different was that Abb was very aware of everything that was going on and we were sharing in her pain and worry.  When we had been waiting for the liver transplant because of the extent of her diseased liver she suffered from encephalopathy which makes it so your mind is kind of in a fog.  Wait and worry is what we did...and continue to do.  The results of the endoscopy showed some irritation in the bile duct and that it could be the source of the bleeding which cannot be fixed by surgery.  This was not a common thing and they really couldn't tell us anything more then.  Because of the biopsy Abb had to spend the night on her side (which was not facing the TV) next to a baby who was recovering from spinal meningitis with only a curtain dividing us so it was a very long restless night. 
Saturday was just a day of waiting.....for test results, to be able to finally eat, and to be moved to the 4th floor ICS (Immunocompromised Services Unit) and her own room.  The results from the biopsy showed no rejection as initially thought, but an infection.  Her numbers had improved but they were not sure if it was the high dose of steroids or the antibiotics that had helped.  Randy had blown up a purple hospital glove and we were playing with it to pass the time.  Abb had 3 IV's now and they were placed so she couldn't move either arm so she was getting pretty good at using her long legs to keep it in the air.  We were finally moved around 7:00 pm that night and as I watched the news at 10:00 I wondered if our delay was to give Justin Bieber time to visit Millie whose room was just around the corner from Abbey's.  I noticed a cute paper on her door that said please don't ask Millie about her kiss with JB, Millie doesn't kiss and tell!!

We fasted for Abb on Sunday and just waited for any news of what was the next step.  We learned that she would need to have a pic line put back in :( and also they wanted to do an MRI on Monday to watch the flow of blood in the arteries around her liver.  

Monday morning they told her at 4 am that she couldn't eat or drink anything and that she could only take small sips to take her medicines. This was so she could have sedation as the pic line was placed. But we were never given a time and the day just kept dragging on and on. We played BS a card game and tried to make the time go by. They did remove 2 of the IV's so she was able to itch her own nose! They finally came to have her transferred to imaging at 3:00 for the MRI. They had given her the option of sedation for this but then told her she could only have it for one procedure and she felt like she could lay still for 30 minutes.  She watched a movie on MRI and felt she could do it and then they changed to a CT with the injection so they could track the blood flow. After this the pic was placed and I knew that the sedation was going to be at the minimal amount possible and she was so brave. They said do you want to know what we are doing and she said yes. Right after her transplant one of the first days that the doctors did rounds and came to her room they asked her if they should just speak to her parents outside of her room and she quickly said no I want you to tell me I want to understand. So each conversation about her she has been involved and ask questions and she often corrects us on things that have been said! So they talked her through each step of the pic line and as she squeezed my hand and closed her eyes I just thought how amazing. So the pic line was in and we ordered her dinner which arrived just as our social worker Barb came in for a visit.  I have mentioned her previously in the blog and Abb was so happy to see her and excited for the flip flops she had brought for her from Hawaii.  We said Abb just eat while you visit and she said no that is bad manners so she just waited until the visit was over at about 7:00 to eat!!

Tuesday we were told that there are two possible aneurysms at the connection site on the hepatic artery.  They are waiting to further discuss this with the transplant surgeon and the radiologist to determine what if anything needs to be done.  Each day her liver numbers have improved and gone down which is very encouraging.  We were discharged back to the Ronald McDonald house as soon as possible because of the risk of Abb catching anything that could hinder her progress. 

Each place we were at the ER, CICU, and ICS everyone remembered Abbey.  They would stop by to say hi and wish her well and she was so gracious as they would say you probably don't remember me but she would say thanks for helping me get better.  As Abb would look for people she remembered she said isn't it weird how important people become to you that you have only know for a short amount of time.  I said that is the same for you Abbey you have made such an impression on so many people here with your sweet spirit, courage and no one will be able to forget your beautiful hair and smile!

We don't have any future plans for now except a clinic visit tomorrow which will probably give us a clearer picture.  We want to again thank everyone for your love and concern, meals and prayers!

The Owen's

Friday, January 4, 2013

They told us there would be ups and downs with Abbey and her transplant. So sad to say we had a setback today and Abbey is back in the intensive care unit. The doctors are working diligently to stabilize her liver numbers that today became elevated after she started throwing up. We would appreciate your prayers.

The Owen's

Thursday, January 3, 2013

Happy New Year, 2013!

We were able to go home again for New Year's Eve and Day.  We ate, played games and tried to stay awake to welcome in a new year. And like everyone else made some resolutions!

I have a new perspective on a few things and I am going to make sure that I follow through on these.  When we heard the words transplant, and donor and the hope we had that Abbey could receive a liver, I felt greedy. I know that last year when I renewed my driver's license I did not choose to be a donor and yet I was hoping and praying that a family or person somewhere had choose to be a donor.  In the hospital environment you feel and see the worry, despair and helplessness of families and to know that somewhere there was a life ending and a family devastated was overwhelming.  Abbey and I have been trying to write a letter to the donor family.  She said today how do we even find the right words to say what we need to say, the words just don't sound important enough.  We will do our best to express the love and thankfulness we have to someone we don't know and may never know but has made the most profound miracle in our lives.

Another thing I will do is continue to give blood and also start to give plasma.  Abbey was very anemic and required multiple blood transfusions and also received plasma on several occasions.  It was life saving and I am thankful to all who have donated on other's behalf. 

Our experience at Primary Children's Hospital has been so wonderful.  We have felt like we have been in the arms of angels as we have been there.  As we were in the PICU (Intensive Care Unit) many of our family and friends came to offer support.  There was a large waiting room there that they would sit together in.  I can't describe the feeling as we would walk in there to see the love and concern on their faces.  It just had such a reverence and as we often kneeled together in prayer it just seemed like it was our room.  As we walked through there after Abbey had been moved to the ICS unit I was so surprised how it was now full of multiple families and that feeling that had been there for us was now gone. 

Another experience that comes to my mind often is of the night when Abbey was taken into surgery.  She was on continual dialysis now and had a breathing tube and their main concern that day had been for her vitals to remain at a constant safe level.  We had not met the surgeon yet who would remove Abbey's liver and prepare her for her donor liver.  It was around 12:30 am and Randy, Liss and I were sitting in a waiting room and Dr. Meyer's walked in.  She introduced herself and then said to us that she did not realize just how sick Abbey was and then she pointed toward heaven and said we are going to need help from above.  As she spoke these words there were tears in her eyes and I know it will sound strange but she just seemed to have a glow about her.  There was such love and concern and she had just met us and Abbey.  We saw her a couple of days later but was told that she only works on a very limited basis and that she is truly the best and we were lucky to have had her.  I know there was no luck involved. 

We were assigned a social worker (Barb) who has become I'm sure a life long friend.  The Sunday that Abbey arrived at the hospital and it was determined that she would need a liver we had to meet with her to be interviewed to be placed on the transplant list.  Our immediate family had to answer pages of required questions and then also speak to a pharmacist who told us the medications that would be required before Abbey could officially be listed.  Because of her efforts Abbey was able to be listed by 1:00 am on Monday morning.  We would look forward to her visits, she brought us her Elf movie and books and her own daughter's Nintendo DS for Abbey to play with.  She made the arrangements for our stay at the Ronald McDonald House, which we are very grateful for. 

The Ronald McDonald House only has two long term apartments and again things worked out that when we needed the apartment there was one vacant.  When we returned from our Christmas trip home there was a folded letter under our door that on the outside simply said room 415.  The letter was on Christmas stationery and told the story of Jeremy whose family stayed here in 1991.  He had a heart defect and passed away when he was 6 months old. They expressed how they felt that it takes a special child to be able to go through physical trials and also special families who must endure the ups and downs of watching a loved one suffer.  Because of this they wanted to ease the burden of a family and had paid for two nights of our stay here.  We thought they must have been doing this every year since 1991.  Everyday there are either families or organizations that provide meals to the families that are staying here.  You just can't imagine how that helps to know that you can have a home cooked meal that is already prepared after a long day at the hospital.   Their brochure states a home away from home and this has certainly been true for us.

So for a few of my resolutions; become a donor, give blood, donate plasma, give back to Primary Children's Hospital and Ronald McDonald House.

We had a clinic visit yesterday and we received the best news ever! Friday Abbey will be released to go Richmond the best place with the best people on earth!

"All journeys eventually end in the same place, home."
-Chris Geiger

~We love you all and look forward to seeing you soon!~

The Owen's