Liver surgery and hospital stay

February 19, 2014

The day had finally arrived!  We had been anticipating this day for a long time now.  We tried to prepare as much as possible and I think we were as ready as ever.  It helped to know that this is what was going to essentially cure our baby.  This surgery was going to remove the cancer from her body and make her better.  After talking to our surgeon about the recent MRI she felt confident with doing the surgery now.  She thought that the tumor had shrunk away from the delicate blood vessels in the liver making it possible to be removed. 

 

This is a diagram of the liver that the Dr. Myers sent me.  It shows the 8 different sections of the liver.  The yellow shaded area is the tumor and where it is located.  The sections that were removed were sections 1, 4a, 4b, part of section 5, and part of section 8.  The gallbladder was also removed.  It ended up being about 30% of the liver that was resected.

On the morning of the surgery we talked things over with the surgeon one more time and hearing the plan made it stressful.  Dr. Myers is amazing and we knew that we had to put our faith in her to know what is best for Jaycee.  The tumor in Jaycee's liver was in a difficult spot to remove, it was right in the center of the liver resting on delicate blood vessels that supply it with blood.  Because of the location Dr. Myers said that she would have to do the surgery similar to how she performs a liver transplant.  For a short time the blood supply will have to be cut off to avoid bleeding to death.  Also if the blood supply is cut off to the liver it can cause it to become sick and possibly go into liver failure for up to several weeks.  Hearing these things were difficult and all our minds could do is think of the worst.  That being said, Dr. Myers reassured us that Jaycee's tumor is quite small compared to others she has removed and that she was confident that her body would respond well.  We were told that it could take up to 9 hours depending on how things went.  Dr. Chen, the Anesthesiologist, talked to us about the sedation and what she would have to do during the surgery.  She was going to have to put in at least two IV's, an arterial line to monitor blood pressure and a central line in her internal jugular vein to monitor venous pressure.  Plus other countless monitors, tubes, and catheters.  Her job to was to keep Jaycee to sleep and to give her blood when needed.  

Once we talked with all of them it was time to get started.  Jaycee was so good and full of smiles like always up until it was time to hand her over to Dr. Chen at the operating room doors. 

 

 

Ready and waiting for surgery to start!

 

 

 

 

 

 

Walking to the Operating room.

 

 

Saying goodbye at the operating room doors as Dr. Chen takes our sleeping princess away from us.

   

 

 

Now it was a waiting game.  It was going to take up to two hours for them to prepare and place all the tubes and lines for the surgery.  It was 10:15am when they took her back.  The nurse would call us every hour and a half with an update.  He called about 12:00pm and said that they were ready and the surgery was starting.  I think this was the longest day ever! We were sitting with dozens of other families waiting for updates.  The secretary at the front desk would answer a phone that was connected to the operating room.  The nurses would call with updates and a family member would walk up and get their update over the phone when it was their turn.  Every time the phone rang we would get anxious and wonder if it was for us.  Throughout the next few hours we would take our turn talking to the nurse about how things were going.  He was very reassuring that everything was going well and as planned.  They had to give her a unit of blood and plasma but that was expected. 

 

 

Took a break from the waiting room and went to the Ronald McDonald family room to try and relax. 

 



 

After waiting for almost nine hours we got the final phone call that they were finishing up the surgery and that Dr. Myers would be out to talk to us.  After waiting for a few minutes Dr. Myers came into the waiting room and sat down to give us the news.  She said that she felt it went really well.  They didn't have to cut the blood supply off to the liver for as long as they thought.  Jaycee had responded really well to the procedure and her liver function was looking good.  They were worried about bleeding but she didn't even bleed as much as they expected.  Considering everything, it went very well!!  This was a huge relief. 

 

 

This is a cross section of the piece of liver that was removed after being sent to pathology.  The black in the center is the tumor.  Dr. Myers said that with the naked eye it appears that the whole tumor had been removed but Pathology will look at it under a microscope to confirm that it was.  We should have the final results within a week.

 

 

Now the next step was getting through the next few days.  We had to wait about an hour before they had her situated in the PICU before we could see her.  It was hard to see her with all those tubes and wires.  There were more than a dozen tubes and wires coming out of her. 

 

 

 

 

Just finished surgery and getting admitted to the PICU. 

 

 

Dr. Myers expected her to be on the ventilator for one to three days.  Jaycee had her own plans and schedule, she was sick of the tube in her throat by about 4am the next morning.  She began to be very agitated and started pulling at all her tubes and wires.  She would thrash her head around and throw her arms around.  This made it very difficult for the nurses to control her and get her comfortable.  They would give her more pain meds that were suppose to last up to two hours but after about twenty minutes she was back thrashing around.  After several hours of holding her down they tried some other sedation medications along with the pain meds but she still would fight it.  The last resort was to try a paralytic to paralyze her body so that she would stop moving.  Twenty minutes later, to the Doctors and nurses surprise, she was thrashing around again.  At this point they gave up the fight with this little feisty girl.  They stopped the sedation and were able to pull out the breathing tube.  After about a minute she began to breath normal again with out assistance.  This helped her relax for a little bit.  She was still agitated and we had to take turns holding her little hands from pulling everything else out.  

 

 

  

 Holding her hands trying to calm her down.

 

 

 

She was pretty groggy the first day, she opened her eyes a few times but was still drugged up.  They were trying to control her pain the best they could with out causing her to stop breathing again. 

 

 

 



 

 

Every once in a while we got to look at her pretty blue eyes!  But she slept most of the day. 

 

Then was awake most of the night!  HELLO!!

 

 

 

Mom was lucky enough to pull an all-nighter with her!

 

 

 

The second day went better.  We saw a huge improvement within just one day.  She was becoming more alert.  She was able to stay off of the oxygen most of the time.  We were finally able to hold her today.  The surgical team was very pleased with her progress. 

 

 

 

First time mommy got to hold her.  It took three people to get her out of her bed and into her arms.  All the cords and lines made it very difficult.  The arterial line in her wrist actually got pulled out right here because there was so many lines to watch.  We didn't realize it until we went to put Jaycee back in bed and Angie had a huge blood stain on the side of her shirt.  Luckily the bleeding stopped on its own!  oops!!

 

 

 

 

After two days in the PICU Jaycee was finally good enough to go upstairs to the ICS (Cancer unit) where she will stay until we go home.  They got her ready and we made the trip upstairs.

 

 

 

She was a trooper and just laid there while the nurse took her central line out of her neck.  I think I would've cried but she just fell asleep like it was nothing! 

 

Ready to leave the PICU.   



 

 

Headed to the cancer unit, goodbye PICU!!!

 

 

 

 

 

Since we have been in the ICS Jaycee has improved a ton!  She is definitely ahead of schedule on when we are able to leave.  Everyday she is able to get rid of a different tube or line and now on Monday (24th of February 2014) we are down to one IV and the drains coming from her stomach.  On Sunday she was able to start feeds again.  It had been four days with out any milk at all.  She tolerated the initial feeds well and now she is able to eat whenever she wants.  Were praying she continues to improve like she has been and we are definitely loving her smiles!!  

 

 

 

The Doctor took the bandage off the 7 inch incision.  She is going to have one awesome scar! 

 

 

SMILES!!!

 

Catching up on sleep.  It was my turn for the graveyard shift and get up with her so I might as well take advantage of a power nap when I can.



 

 

 

The doctors said that if things continue to go well we will be able to go home by this weekend.  It will be good to be home.  Our second home here at the hospital is nice but we miss our OWN home and BOYS!!  Thanks for the all the visits, it sure makes the days go by quicker.  We will continue to post on her progress this week and the weeks to come.  We are grateful that the surgery went so well and that she has surpassed the Doctors expectations with her recovery. 

 

 





 



Genetic testing

February 18, 2014

The past couple of weeks have gone pretty good.  Since the last blog post Jaycee has been healthy and happy.  The second round of chemo went much better than the first.  There were no extra hospital stays other than the planned ones with her chemo.  Throughout the second cycle we had to give her a shot every night to help her blood counts stay where they are suppose to be so that she would be ready for surgery.  If her counts were low then surgery would have to be postponed.   Luckily that never happened and she was right where they wanted her and surgery is on for February 19th. 

 

On February 18th we finally were able to meet with the genetic doctors to do some testing so that they can figure out exactly what types of conditions Jaycee may have.  Ever since the beginning, the doctors suspected that she has a condition called BWS (Beckwith Wiedemann syndrome).  BWS is an overgrowth disorder usually present at birth and characterized by an increased risk of childhood cancer.  She also has hemihyperplasia which is the overgrowth of her left side.  All the doctors up to this point have thought that this was her diagnosis and after meeting with our Geneticist he confirmed it.  He said with all her symptoms and what he can see, he would say that she had BWS.  They are going to do some genetic testing and they will be able to see exactly what chromosome was affected and if it was inherited or just a mutation of that specific chromosome.  This was a very educational doctors visit.  It was interesting to see how detailed they can get now days with looking into the DNA.  
 

 



 
Jaycee was a good sport during the two and a half hour long appointment.  She was full of smiles and happy to be there.  Over the next few days they will be drawing her blood and possibly even taking some of the tissue from the tumor that is removed so that they can extract DNA for the testing.  This is very interesting to me, it is almost like a road map for us in the future.  We will know better of what to watch out for and what to monitor as she gets older.  We will post more once we get the results from the genetic testing and then we will have a better understanding of how all of this started.
 



 

After our genetic appointment we had to go to the surgical floor to have blood drawn for surgery tomorrow.  Everything was looking good, they were able to access her port for the blood drawn and leave it for the operation.  Jaycee, like always, was a good sport and just watched as they poked and prodded her.  It is stressful thinking of surgery but we are glad it is finally going to get done.  We will post more on the surgery as it happens so that everyone can keep up to date.  Thanks again for all the prayers and support.    

Second cycle of chemo therapy.

January 23-24, 2014

We are back to begin Jaycee's second cycle of chemo.  We had a CT done on January 13, 2014  to look at the progress of the first cycle.  Since it made her really sick the doctors wanted to adjust the dose of medications she is receiving in hopes that she will have less side effects.  the CT showed that the tumor is still about 3.5cm big, so it has not changed in size, but it does show signs of necrosis or dead tumor.  This is a good sign, the treatments are working and the tumor is dying.  It is also a good thing because they were able to modify the dose of one of the chemo therapy medications.  This should reduce the side effects, especially the mucusitis (mouth sores), and hopefully help her recover more quickly.  If things continue to go as planned the doctors want to do the surgery in about 4 weeks.  This will give them time to finish this round of chemo and then give her about a week to recover.  Surgery is going to be hard but this is ultimately what will cure her and get rid of the tumor.  After that is done they will follow up with four more cycles of chemo treatments to make sure all the tumor cells are dead.  During our clinic visit last week the doctors and surgeons were very optimistic about the progress and what they are seeing so that makes us feel much better!  We are headed in the right direction.  

She was all smiles.  What a good way to start another round of chemo. 

Jaycee is finally starting to laugh, but catching it on video is not very easy.

Jaycee was happy and healthy going into this second cycle.  We hope that the doctors are right and that she will have an easier time with this one.  During the first and second day of each cycle of chemo we are required to be admitted for a minimum of two days.  The first day they start off by giving her lots of fluids and magnesium for about four hours to prepare her body.  Then the treatments can begin.  It takes about seven hours to infuse 2 drugs the first day.  Then day two only takes about an hour to receive three more drugs.  Jaycee has been so happy and you would not even be able to tell that anything was wrong.  Some of the effects including the nausea and vomiting are delayed so we will be waiting for that to set in over the next few days.  We will be going home with a feeding tube and IV fluids so that we can make sure she is getting the nutrition and hydration she needs.  That was one of the problems before, she got dehydrated and quit eating.  This will hopefully help us from getting behind on that and will keep her feeling better.   Other than being bored and having a long night sleeping on the couch, this cycle has gone fairly smooth and painless.  We hope that this is the trend for the next few weeks!!

Little Jaycee is a trooper and has taught us so many things.  We don't know what we would do with out that contagious smile!!  Life has been busy with trying to balance everything with Daxton, Crue, and all the hospital visits and we would not be able to do it with out the help of awesome family and friends.  We will keep posting about her progress to keep everyone informed.  Thank you for your love and support!!!    

Day 11-->Fever -->ER visit--> Ambulance ride--> hospital stay--> ICU = One L O N G week at the hospital!!

December 28, 2013--January 7, 2014

On day number 11 of the first cycle of chemo was the beginning of a long hospital stay and some SCARY moments that I hope we never have to see or deal with again.  

On December 28, 2013 it was early in the morning and Jaycee was restless and could not sleep well.  Her head felt warm but every time we took her temperature it registered normal.  It didn't seem right but we thought we would wait it out.  I ended up getting up and having to rock her the rest of the night because she couldn't sleep.  I was debating on going into work but it seemed like she was going to be fine and get better throughout the day.  By early afternoon Angie began to notice that she was getting weaker, lethargic, and she was to the point where she did not want to hold her head up.  She called our oncologist and they told us we needed to be seen at the nearest ER.  She ended up driving to Utah Valley Regional Medical Center so that I could drive down from work in Orem and meet her there.  We ended up getting right in and the Doctor could tell she was really sick.  She ended up having a fever of 101.4 and that means we are automatically admitted at primary's to watch her.  Our Doctors at primary's wanted her transported by ambulance.  Since we were there at the ER they we were able to do the transport and take her in our ambulance.  It was a lot different being the patient care guy in the back of the ambulance when the patient was your own child.  I hope I never have to do that again but it was a cool experience at the same time. 

Waiting in the ER at UVRMC to hear back from the doctor at primary children's. 

 

Ambulance ride to Salt Lake with Orem Rescue 33. 

   

Angie enjoying the ride in the back of the Ambulance. 

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 December 29-30, 2013

After getting to the hospital the night before we had no idea or even expect that we would be spending the next ten days in the hospital.  Fevers can be really serious to chemo patients since their bodies are unable to fight off any infection that it could have got.  During the transport up to primary's Jaycee was given an antibiotic to help with any infection that she might have.  There were several blood tests and samples that they took to try and figure out what was causing her fever and making her so sick.  Within less than a day of being there we found out that she tested positive for Rhinovirus.  It is a virus that is basically like the common cold.  It was something that would have to run its course because antibiotics would not get rid of a virus.  Jaycee began to get congested and the symptoms were starting to manifest themselves more and more almost by the hour.  They nurses and doctors in the cancer unit were just trying to control her pain and make her comfortable. She was going on almost 4 days without eating anything so they finally decided to do an NG tube that we could feed her through.  Things were going fairly good and we were hoping that she was on her way up from this sickness and that it would be short lived.  The feedings went well and we felt a lot better knowing that she had some milk in her stomach.  We felt like we were starving our kid even though there was nothing we could do about it. Around the evening time on December 30th we could tell that she was getting worse and that she didn't seem to be improving at all. 

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December 31, 2013

New Years eve was not very exciting for us this year.  Our baby was getting more and more sick every day and we were just hoping for something to turn around and see her show some improvement.  On this day she was starting to have so many secretions from the rhinovirus and mucusitis that she began to have difficulty breathing.  They wanted to suction the secretions out but it was to much of a risk since her platelet count was low and they didn't want to risk making her bleed in her airway for fear that the bleeding would not be able to stop.  They decided to do a platelet transfusion so that they would be able to use suction and help her breath easier.  After the platelet transfusion they were able to do some deep suctioning further down in her airway and it seemed to work well in the beginning but by time we reached the afternoon she had so much mucus that the suctioning was not effective.  

At this point we were able to see basically the whole inside of her mouth was one big sore from the mucusitis.  Every time we would swab it and clean it out the skin would slough off.  It looked so painful and you could tell that she was hurting.  The doctors ordered morphine to help control her pain.  By the afternoon oxygen was needed to help her breath easier and then around 11pm she got to the point that the oxygen she was getting through the nasal cannula was not enough.  The doctors thought she needed more help and the best place for them to do that is the PICU (Pediatric Intensive Care Unit).  The respiratory therapist came to our room to assess her and he was there waiting to walk down to the PICU with us.  He suggested that she be put on High-flow oxygen to help open her lungs and to help with the secretions.  While waiting to get a room things turned bad quickly.  I was holding her and trying to help her in any way I could.  I felt so helpless.  I could tell by the look on her face that she was fatigued and that she was wondering what was going on and why she was feeling this way.  I would give anything to have been in her place.  To see your child suffer while you stand there unable to do anything to make her better was the worst feeling I have ever felt.   Jaycee was struggling to breath and fatigued for so long that she couldn't keep up.  She started to turn blue and her oxygen saturation's declined and dropped to the 50's within seconds.  I, being a paramedic, and knowing how serious this could be, thought that this could not end well.  Luckily we had the respiratory therapist close by and after a few minutes of stimulating her and trying to suction her airway, they were able to get her breathing normal again.  The Respiratory Therapist put the high flow oxygen on her which, luckily, helped a ton!!  It was amazing the difference it made.  At that point I wished they wouldn't have waited so long to try this earlier because this is definitely what she needed.  For some reason she remained tachycardic (High heart rate) for a bit after this episode.  This concerned the doctors so they wanted to check her heart by doing a 12 lead EKG.  This would give them a little better look to see if there were arrhythmia's or any underlying causes of her heart rate being so elevated. The EKG looked good and they thought it could have been the stress on her body.  It was a relief for us knowing that.  

Heading down to the PICU.

Getting 12 lead EKG done before we get moved to the PICU.

After getting her stable, we made the trip down to the third floor to the PICU.  We were met by a group of doctors, residents, fellows, nurses, and respiratory therapists as we entered her room.  Everybody was very concerned and it gave us peace of mind knowing she was in good hands.  Minutes after arriving at the PICU the clocked turned to midnight.  This was not the way we planned on ringing in our New Year but at least we still had our daughter with us and she was actually looking better than she had just minutes before. 

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January 1-3, 2014

The first day of the new year appeared to be better than the day before.  By this time we were starting to get exhausted and it had been a few days since either of us had seen our boys.  We thought it would be a good idea to have them come up and spend some time with them. They were starting to miss us and you could tell that they were very concerned about their little baby sister.  They wanted to see her so bad but they were not allowed in the PICU.  It was a lot of fun seeing them and being able to do some activities with them.  It helped get my mind off things.  

(Here are the pictures of our first day in the ICU and when Daxton and Crue came to visit us).

              

These were all the pumps they had going while in the PICU.  This made it very difficult to hold her.  One of them was a Morphine drip and this ended up causing big problems later on. 

 

Grandma came to visit. 

  Crue missed his daddy.   He didn't want to let go!

       There is a room for the kids to play in and to do crafts.  They loved it.  We we able to play in there for a while and spend time with the boys. 

 

After spending a few hours with the boys I thought it would be a good idea to send Angie home and spend the night in our own home.  She needed a break and it would be good for Daxton and Crue to have her home for a change.  This turned out to be the be a good thing because Jaycee ended up having another episode that would have scared Angie to death.  I said good bye to them and I walked back upstairs to hopefully find Jaycee sleeping so that I would be able to lay down and get a few hours of rest before she woke up again.  When I got back to her room I found the nurse and Respiratory therapist in there. They said she was doing alright other than her oxygen saturation's kept dropping, they increased her oxygen and that seemed to help.  They all walked out of the room, only myself, Angie's sister and her husband were in the room.  We were talking as we stood around Jaycee's crib looking at her talking about how our week has been.  A few minutes later the alarms started to sound which was a regular occurrence.  I was use to hitting the silence button on the monitor because it was a false alarm due to a sensor coming off.  But this time I could tell that something was really wrong.  Even though it was dark in the room I could see the color drain out of Jaycee's face.  She had stopped breathing and that is why the alarms were going off. Luckily the nurse and doctors were right outside the door and they came running in thinking that there was a problem and they noticed right away that she wasn't breathing and they needed to do something fast.  This was one of the scariest moments in my life.  To see your child stop breathing and doctors scrambling to help her.  They were not quite sure at first what was causing her to do this but they decided to try and giver her Narcan, which is a drug that reverses the effects of narcotic pain medicines.  She was on a morphine drip for pain so they suspected that she possibly stopped breathing because the pain medication cut out her respiratory drive.  It took about a minute after they gave her the narcan but she finally started to breath on her own again and then just a few seconds later she was screaming.  Hearing her cry never made me so happy.  That would have to be the worst feeling in the world to know that you were close to loosing your child.  This was a good reminder to me to remember how fragile life is and how quickly it can be taken from us.  I am glad Angie did not have to experience this with me because she would have been shaken up pretty good.  To my surprise, Jaycee was able to sleep great that night after they reduced the dose of the medications she was receiving.  We are grateful for the the Doctors and nurses that took care of her that night because they truly saved her life.   

Pediatric Intensive Care Unit

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January 4-7, 2014

After spending three days in the PICU we were able to move back up the the fourth floor in the cancer unit.  Jaycee still had to be on high flow oxygen for a couple more days before she was able to ween off of it.  Eventually all she needed was a nasal canula to keep her oxygen levels where they needed.  At that point they were comfortable sending us home.  After almost two weeks in the hospital we were ready to go home also.  We had to take her home on oxygen and her feeding tube/pump.  By time it we were ready to leave the hospital she was finally starting to smile again and we could tell she was feeling a little better.  Knowing that helped us feel more comfortable to bring her home.  her blood counts were improving and the mucusitis was getting much better by this point.  

Last couple of days in the hospital before we went home. 

Once we got home Jaycee was as happy as could be.  Every day she improved and she finally got mad and pulled her feeding tube out.  I think that was her way of saying I am done with it.  She began eating on her own again.  She was back to normal after only a few days.  It was great to see that big, happy smile again!!