brycensbattle

Tuesday, December 27, 2016

update/ Miracle

This is a recap of the past week since we received a call for a transplant for Brycen. I apologize if this text is a little scattered. Emotions have been probably the most extreme we have experienced in our lives. Monday the 19th was our 8 year anniversary and was just a regular day, we went to bed like any other night. Just before 12:30 A.M. Brycen's feeding pump began going off. Shortly after walking in his room to check on it, my phone began to ring. The only thought I had was the Liver Clinic. Sure enough it was our Nurse Whitney. She began by saying "Hey shayli, it's whitney. I have Gina here with me as well." I knew at that moment this was about an offer for Brycen. "We have an offer for Brycen and it's a great match." I began to sob. "Are you sure? Really?" "Yes, could you be here by 10 a.m.?" "We will be there." Dr. Kim the transplant surgeon would be flying out to look at the donor liver that afternoon. They asked about any fevers, exposure to sickness, etc. We have the cold with a nasty cough going through our house and Brycen had just began coughing the day before. They still felt like we were okay. I walked in our room and said "Chad, Brycen has an offer and we need to be there by 10am."We both laid in bed crying and hugging. We said a prayer together for Brycen, doctors, surgeons and the donor family. Chad's first comment was "that means someone else lost their child at Christmas time." We cried and prayed. We were in disbelief. How could this be? Brycen's PELD score was only an 8. We laid in bed thinking about trying to get some sleep and by 1:30 I got up and began getting suitcases ready, doing a load of laundry, and finishing up Christmas wrapping. By 4am I just couldn't wait any longer and called my mom. She too was so shocked! "Mom, Brycen has an offer," "What?" "He has a Donor!" "Oh my gosh are you serious? I didn't know he was that high on the list?" "He's not." As she tried to talk through her tears, I couldn't understand her. By 4:30am chad called his parents. "hi, chad" "Brycen has an offer." What, just a minute, let me put you on speaker."They too were in shock. shorty after they arrived at our house and Chad and Grandpa Bryant gave Brycen a blessing. At this point Sadie had been up since 4am and we woke up Brayli around 5am. The girls did so well. We left for Salt Lake around 5:45am. When we arrived and Saw Whitney, the smile she had on her face never left all day. Seeing her so excited for our sweet boy, meant the world to us! We love her and the relationship we have with her. They did blood work, x-rays, ultrasound, and nasal swabs for any virus. He came back positive for para flu, which is a respiratory virus that causes coughing and small fevers. We got word around 6:30pm that Dr. Kim okayed the Donor liver and was headed back. This was a big step in the day because the surgeon could have denied the liver if he didn't like the look of it. Brycen then went to the OR (operating room) around 9:30pm. My sisters, Brooke and Ashley had arrived, which was so nice to have that support! Dr. Kim came out around 11:30pm to talk to us. He mentioned Brycen's virus and how it could be a rocky recovery, but he still felt he needed to go ahead with the transplant and that he had discussed this with Dr. Book. Dr. Book then called me and we talked about it as well. She felt we needed to proceed with the transplant. I was able to fall asleep a little after the surgery started. Soon I heard, "Shayli, here comes the surgeon." My heart began pounding! What is wrong? Why is he here? As he sat down, he said, "I had to stop." My heart sank. He told us that as soon as he opened him up he found a pocket that was filled with fluid of primarily blood and bile that we knew was there. This pocket of fluid was roughly the size of a soft ball and a half. He then removed it and at that point Brycen became unstable, so much that he knew he could not proceed or Brycen may not make it. Whitney had been there in the OR and she came out with Dr. Kim. She mentioned Dr. Book would be coming in to talk to us. To have Brycen's doctor come to the hospital in the middle of the night was truly a moment that showed us just how much she cares for our little boy. To have her explain everything and be there was so comforting. We first thought, why? The donor was a perfect match. Then we were concerned about the liver not getting used but the donor liver was so small that it couldn't be used anywhere else in the time it had out of a body so the donor liver went to be used for study purposes. Soon after Dr. Kim came and talked to us, went and saw Brycen in the PICU (pediatrics intensive care unit) and then got lucky to get a sleep room at the hospital instead of getting a hotel at 3am. All they have in the sleep rooms are twin beds so Chad and I got to snuggle all night. It felt so good to get that 5 hours of sleep after being awake for over 24 hours. We quickly realized that this was still a Christmas miracle, even though it wasn't the miracle we thought we were getting. Brycen's doctor for the past month has been saying this is what was happening in Brycen's belly, but knew no surgeon would go in for surgery to fix it since he was listed on the transplant list. It was a miracle this donor came available, so they would go in and be able to remove the pocket of fluid. This surgery needed to take place. My thoughts often still turn to the donor family. I just want them to know that even though their child's liver was not used the way we all hoped, it still saved a life and was a miracle to another child. When the doctors and surgeon said that this reparatory virus Brycen has would make for a rocky road, they were so right. Normally the PICU stay is only a few days and he has now been there 7 days. They had to put him on the CPAP machine (breathing mask that covers his nose) for a few days and took it out on Christmas, switching him to the high flow air up by his nose instead of the mask. We don't know how much longer we will be in SLC recovering. They used the term yesterday describing Brycen "Medically fragile." I wish I could take this away from him, it's so hard to watch him struggle. My Christmas gift was getting to hold him! As well as them allowing the girls to go in for a few minutes(they both are fighting a cold so it was a brief visit). This has been a very different Christmas, but has brought a whole new meaning to the Christmas season and for my Savior. We are so grateful to those who made it possible to have our girls here with us. We are also grateful for Chad's family who came and spent their Christmas in a hotel with us. At the church service yesterday in the hospital, a mother, whose child has cancer for the second time, told us that when they found out her cancer relapsed, the child told them "The more faith you have, the easier it will be." This has stuck with me and I hope it will continue to stay with me during these hard times. I'm very nervous for the next time he enters the OR and what will lie ahead. Fear creeps in and sometimes it's hard to have faith. After the surgery, Dr. Kim mentioned that Brycen's liver didn't look as sick as other children he has done. He mentioned that other biliary atresia babies have had tough, bumpy, green livers and Brycen's was red and soft. This gave us a little hope that Brycen may not need a transplant at all. That thought quickly got silenced when Dr. Book called for another biopsy of Brycen's liver to reconfirm that Brycen is extremely sick and fragile and without a doubt needs a new liver to survive. He got the incubation breathing tube out Wednesday and they put him on high flow air. Each day, Brycen's virus got worse. He needed to cough and couldn't. Friday night he finally coughed by himself and that was such a great thing. He still has a rough cough which we can tell hurts him every time he tries. He was not showing any signs of improvement all week until a few days ago. He peaked at a fever of 105 and a belly diameter of 57cm which looks like a basketball with arms and legs. He now only has one line, which is his picc (line placed in the arm and runs above his heart). It's so nice to see lines slowly disappear from 5 tubes down to one. His belly had gotten as big as 57cm and it has been coming down and is soft. He usually gets around 53cm then we have to have his belly drained. This is so great that it is coming down by himself. It has been so great for Brycen to be able to rest. We are so grateful for those taking care of him and the great care they give him. I'm grateful my parents could come and see him and bring the girls to us. To chad's parents, sara, kirsten and austin, who spent Christmas with us, Thank you! Thank you to all the prayers that have been sent our way and for Brycen, we continue to need them. We know prayers are answered and not always how we would think they should be.

Friday, December 2, 2016

Bingo for Brycen

A few weeks ago, a few ladies put together a fundraiser for Brycen, "Bingo for Brycen." We could not believe the support the community has shown for our sweet boy and family. They spent countless hours of their own time working on this for 2 months. The event started at 5 P.M. and we pulled up at 5, the parking lot was already getting so full! We couldn't believe it. The committee had planned food for 250 people and we got a count of 503 that night. Running out of food within an hour. When I say we live in the best place/community I truly mean it! They come together for not only great events in ones life, but those events that are so hard and troubling. Some complain about how in small communities everyone knows everyone. For our community this is such a blessing. You need help they are there. We are now true witnesses of this. The out pouring of love and support has been beyond what we ever imagined. Bingo for Brycen was a huge success, raising roughly 4 times more than we initially hoped for. Some have asked what the event raised the night of, Numbers came in just around 30,000 in one night. We had around 120 silent auction baskets and 5 live auction items. We can not thank those who helped put the event together and those who donated or volunteered enough! We had family and friends travel 2.5 hrs on a week night to be there and support us, that means the world to us! I had chad do the Thank You speech, because I knew I would be a basket case. Which as I gave the committee members a gift, that is when my emotions came. My sister and her dear friend helped make some plaques that read " I BELIEVE there are ANGELS amoung us." I know not just our committee members are our angels, but everyone who has donated or helped us in any way. As strangers have walked up to us and given us money, to family who we know have sacrificed by donating, tears have been shed many many times. I find myself, several times a week, trying to explain to our girls that tears are for gratitude and joy and not just sadness. As I sent photos to Karli, who made Brycen's video, emotions came back to the surface and we know it will only get worse before it gets better. I know this fundraiser not only was a blessing to us but was a blessing to those who served us and put it together. Our Families have helped so much. Both Chad's parents businesses donated the bingo prizes, valued at $50 a piece. My mother put all the food together and ran it that night. Our ward family, who helps take care of our girls when we are gone, is such a blessing to us. I have learned many lessons through this trial, and one that is the biggest is to trust in the Lord! Next is, how to humble ourselves. Chad and I are both very independent people and as I have to ask for help, this is a huge deal and I am forever grateful for those that step in when I need it! Thank you! Brayli's school teacher Mrs. Johnson, also got involved by helping the kids at Afton Elementary donate for Brycen. They set up a jar in the office, where kids could donate. As Our own child would say, " Mom, what can I do, so I can earn some money for Brycen, so he can get better?" This was so heart warming, as my child is learning how to sacrifice her time and money for someone else and to serve. All the money from the schools turkey trot went to Brycen if I am correct. The school alone raised $1,500. These are kids K-3. I am forever grateful for Aaron Jenkins who was so willing to came and photograph " Bingo for Brycen." Thank you from the bottom of our hearts to everyone! Here are some photos of the event and from the school. I wish I could share them all, but there are way too many :)

Monday, November 28, 2016

Struggles

I've been struggling with how and if I wanted to share this...so here it goes.. We have been so blessed and we are so grateful for so much! We made it home Friday night and got to go to our favorite parade the "parade of lights." We had thanksgiving dinner with my family on Saturday and Chad's on Sunday.

Here's the hard thing for me...It's not always easy staying so positive and collected during our struggles and hard times. As much as I am trying.. the past few days have been so hard for me. Yesterday at church our normally happy easy going baby had a really rough day! As I took him into the hall all I wanted to do was cry. He struggled all afternoon :( then half way into the night he began to gag and throw up, I was constantly in and out of bed. To top that off our Sadie threw up and keep throwing up several times through the night and then at 6 bray began throwing up. It's days like these that are so hard. All I want is some decent sleep. Is it too much to ask that my baby get better?! Normally when we leave the hospital after his belly being drained I feel fantastic knowing this won't happen again for severa weeks or even a month. This was not the case this time. Due to his complications, they couldn't drain as much out, which makes him still uncomfortable. He's still trying to adjust to his new feeding plan. One night is great and the next isn't. He won't take a binkie like used to since being in the hospital this time. All I can think about is when will he be admitted again? Will we spend Christmas in the hospital too? I sure hope not! This momma is having a hard time and I just want my baby better so we can have somewhat of a normal life again. Knowing harder days are ahead I can't even try to think about. My babe has been so happy and I'm not ready to see him get worse. I just pray to understand God's will and his timing.

Tuesday, November 22, 2016

Update

Thank you to those you have and continue to pray for Brycen and our family!! We have witnessed time after time the last 2 days that prayers are being answered and miracles are taking place! I KNOW God is REAL!

This morning when Brycen threw up it got on the dressing for his picc line, so it had to be changed. In the process his stitches all came out and the line came out a few inches as well. Was I a little paranoid when I first saw this?! Of course! They did a chest X-ray and it confirmed it was no longer central and no longer safe to administer through. I have to tell you how wonderful it is to see familiar faces at the hospital. One of our very own SV guys, Mike Head did Brycen's X-ray today! This was so awesome! Since Dr.Book was hoping to get Brycen off IV nutrition (TPN) and some fevers he has been having, they decided to pull the Picc line for now! He now has an Iv in his foot, so they can continue to give Iv antibiotics. Which he will be done with those tomorrow and they will see what and how his body does. They also want to see how he does on the continuous NG feeds at night. If he continues to do well weight wise, with no TPN then no picc will be needed, if he doesn't then in a few weeks a new picc may be placed.

Results from the HIDA scan...NORMAL! This is the miracle we saw today! No surgery is needed. Why then is there bile in the fluid?! They didn't know! A few of the doctors spent some time researching this yesterday. What they have found is that the blood may have turned into bile. The human body is so incredibly amazing! What happens to the blood still in his abdomen?! The body will re-absorbe it and naturally get rid of it.

Brycen's first tooth popped through yesterday!! He hates when I try to feel it :) we love this little boy so much!!

The elemantary school that Brayli attends had a turkey trot today. At the assembly they talked about how the students, k-3, and teachers have been putting money in a bucket for Brycen and they presented that money to Brayli and Grandma Pam. Not being able to be there today was hard! We are so grateful that grandma and grandpa step in and fill our void.

We know the power of prayer is real and so are miracles!

Monday, November 21, 2016

Update

We finally got to talk with a hepatologist his morning! Not just one, but all three of them!! It was so wonderful to see doctor Book! She even gave me a hug! We just love her so much and are thankful for our medical family here in SLC and at home!

They told us that as soon as the doc put the needle in for the drain there was instant dark blood. His hemoglobin has been slowly going down, which means that blood has been in his belly for awhile and could be a contributor to the high heart rate. They found bile in this fluid as well. Which brings us to where we are and why this trip is so complicated. They need to find out where the bile is leaking and then get a solution. Which means most likely surgery. All of our questions where finally answered today! This is something that needs the speciality Doctor! It is so different talking with a Resident compared to a Hepatologist.

How do they find the leak? They will do a HIDA scan (which is only done on certain days) to track the bile. They have already let surgery know what is going on. If surgery is the solution, Dr. Myers who did his kasai will be doing this one as well!

Brycen is still his happy little self! Kids truly are so resilient! Starting tonight they will start decreasing his TPN/lipids (IV nutrition) and starting normal NG feeds. Dr. Book is hoping we can get rid of the TPN and the picc line before we go home! This is so great as well. If the picc is not needed for TPN then it's better to take it out as the risk is so much greater.

We have had so many good things happen and we know that prayers have been answered! I'm so grateful for our Father in Heaven and our Savior Jesus Christ! It is through them that we find joy amoung these hard times. It is in and through them that we find comfort and peace. I know the atonement is real as we see it every day. I know my savior lives and loves us and knows what we are going through and these trials only make us stronger. My sister resently sent me a quote that reads " Challenges are at times an indication of the Lord's trust in you."- D. Todd christofferson

As I have pondered this and read a few talks on care givers and as strangers have reached out to me, I know this is journey we are on right now is what I am here to do! As I have felt down on myself about not serving those around me as I feel I should, not doing my visiting teaching as I ought to be and letting house work go undone for days, I am still learning that I need to take some time for myself. How can I care for my little babe if I'm not taking care of myself. It is a lot of work caring for someone else the way I do, it's very physically and emotionally draining. It's a hard balance to keep our house running and in order. I know that my savior helps me get through each day!