Monthly Archives: October 2014

Buckle up, God’s driving

IMG_6607Multiple times a day I get a text message from family or friends asking, “how is Beckett doing?” or “how are you doing?” and “Is there anything I can do for you?” The kindness and love of these people humble me to my core. However, with every text message response I have to ask myself;

How am I REALLY doing?
What fear is Kimmie hiding that she is covering up with motherly positivity?
Is Beckett’s blasted Kasai going to work?
How long will it work for before he will need a transplant?

A simple answer applies to all of these questions. I don’t know.

I remember driving home to Orem, Utah with my father on I-15 from Salt Lake City one afternoon. There was a constant rain drizzle falling from the bland gray sky. With no announcement quarter sized raindrops attacked with great ambition. The freeway quickly filled with inches of water creating the worst possible driving conditions. With every knock of rain on the windshield it was clear to my father and I both that there was nothing clear at all about the situation we found ourselves in. We couldn’t see past the windshield. Everything was a blur except the fact that steady streams of water on the highway were the immediate cause of newly congested traffic that could result in significant peril.

This scenario was scary as a young boy. Scarring enough to deposit this life event into my memory bank. With my surroundings increasing in danger and blurring vision ahead I had to rely on my father to get me home safely.

I find myself in a similar situation now. How could my son have Biliary Atresia? Where did this all come from? I can’t see past today but all I think about is tomorrow. I just got sucker punched by Life. It hurts. It makes me angry. I am grateful for the life lesson but would like to be done learning now. I crumble without prayer and the companionship of my wife. It’s scary to look at your son and see the potential negative scenarios that could take him from this life to the next and you know, you know that you will have to face each one of them.

So here I am Lord. I’m in the passenger seat with my seatbelt securely fastened scared as hell. Please, get us home safely.

Written by: Shawn

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Life Lessons from Primary Children’s Hospital

This past week as we have spent numerous days in the hospital, I have learned several little life lessons. To make sure I don’t forget them I really wanted to write down the things that I’ve learned.

1- Everyone has trials and pain

I know this one seems so obvious but as I have watched so many people here in pain, it has become so clear to me that everyone goes through so much. And most of it is not visible to the naked eye. It reminds me of the hymn Lord I Would Follow Thee which says “In the quiet heart is hidden, sorrow that the eye can’t see.” Oh how true this is. And how deep that pain goes.

As we sit in our hospital room, we have seen families get admitted. The looks of anxiety, fear and sorrow on their faces can be overwhelming at times. My heart just aches because I can now relate in a way that I never have before. I know just how deep that pain goes. It gives me greater empathy for what others may be experiencing.

2- The world is more kind than we realize

I felt so very alone when we came here. Then we have met countless doctors, nurses, social workers, staff and families of sick kids that have reached out to us and pulled us in. I have had several moms of kids with Biliary Atresia reach out to me and show me that I am not alone. They don’t even know me. But the love that they have showed has made a huge impact in my life.

I’ve also noticed small acts of kindness that go such a long way, from the waitress who gave us a free appetizer just because, to the people who have graciously donated to help us out financially, some who we haven’t seen or spoken to in years, to the nurses who stroke our baby’s head and talk to him instead of just taking care of his needs, to the smiles and nods of encouragement as you pass a fellow parent in the halls, to the surgeon who stops what he’s doing to put his hand on your shoulder and make sure you’re ok. It’s amazing how kind and caring the world is if we really pay attention to it.

3- We are a family

As I started to realize just how many others are going through similar things that we are, I started to feel like we were part of a new family. It dawned on me that our “families” can come in so many varieties and sizes. We all have our immediate family and our extended family but we are also part of bigger family units like our church family or school families. And it was made so clear to me that we have joined a very special family when I met with some of the liver doctors and their social worker and the first thing the social worker said to us was, “Welcome to the family!” As I’ve spoken with parents of liver kids, I felt so included. I felt like I had met my sisters.

4- It’s the small things that matter

Another thing that has been reinforced in my mind that I knew previously was that it’s the small things in our lives that really matter. It’s the smiles, the kisses and hugs, the kind words that matter. The big stressful stuff just doesn’t matter in the long run. It’s our relationships with others. It’s the love that we feel and show. It’s service. That’s what matters. That’s what helps us all get to where we need to be.

5- Celebrate the victories

This was a powerful testimony to me this week. Celebrate the victories and forget the failures. As we waited for simple things like bowel sounds in Beckett, I thought about how important it is for us to relish those victories, no matter how small they are. A victory is a victory, no matter how small. When Beckett pooped for the first time after his surgery, we were so thrilled. Yep, over poop. Because to us it meant the world. It meant that after surgery on his intestines and moving them around, they were waking up and working. So poop was an important victory for us. So we celebrated by making a “POOO” ghost to put on the window of our room.

We also had a fantastic victory this morning with Becks smiling for the first time since Monday. Oh how my heart melted. What a great victory. This whole process has helped me realize that I need to find the victories in my day to day life and celebrate them whether they are little, like making a warm breakfast for my kids or big, like Beckett surviving major surgery. I am determined to do a better job with finding those victories and forgetting all the things that I didn’t get done, the “failures”. Because in the end, who cares. Who cares that they laundry didn’t get done or the dishes are dirty. I choose to focus on those things that I do accomplish.

6- The Lord is in the details

Oh how I know this is so true. I know that my Father in Heaven is aware of me and my family and our struggles. He has shown us so many tender mercies this week and I will forever be so grateful for him helping to make our trials a little bit easier.

When we were here last week, a friend in our ward sent me some contact info for a friend of hers whose daughter had liver issues. This woman added me to a couple facebook groups and through that we actually found out that across the hall from us was another family whose daughter has Biliary Atresia and is here waiting for her to get a liver transplant. I spoke with her online briefly and then the next morning as I went out to get a snack off the cart, I saw her. I introduced myself and she gave me a huge hug. We have since spoken several times and she has been a source of great comfort to me. I’m not alone. There are others who know what we feel like, who know the pain of finding out about this awful disease and feeling like you were punched in the face.

At the end of the week, we found a news article about a family in Pleasant Grove whose daughter, Mona is almost four. She had the Kasai when she was a baby and now was in need of a transplant. Her mom was a match and because she didn’t need a full liver, her mom was able to donate to her. So amazing. It gave us hope. Well, as we were waiting for Beckett to get out of surgery, we happened to overhear a phone conversation and quickly figured out that this woman was the grandma of Mona. We were stunned. Their live organ liver transplant was happening at the exact moment that Beckett was having the Kasai. When she got off the phone, we apologized to her for eavesdropping and then told her we knew who she was and told her about Beckett. She was amazing! Such faith. Such strength. Oh how that woman will never understand how she helped me through the scariest moment of my life so far. Later that day she sent Mona’s dad out and he talked to us for awhile about everything. Tender mercy for sure.

I know that the Lord has been with us. He has placed people in our lives at the right time to help us through. To help us process. To help us heal. Without Him I don’t know how we would have survived. Oh how I need him. And my eyes have been opened to see just how involved he is.

Written by: Kimber

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Kasai Recovery – Day 3

Beckett Oliver

Because Beckett wasn’t eating, we were actually able to sleep really well at night. He was so sleepy and would only wake up when the nurses came in to check his vitals. Then they would put him back to sleep. So even though Shawn and I were crammed on this tiny little couch we slept pretty good. After we woke up (around 6 am again!), I pumped and we got ready for the day. We met our nurse Tammy and she was amazing!! So fun and willing to help us with whatever we needed. We decided to give Beckett a bath because he was starting to smell like hospital. It was a little frustrating because he couldn’t have much water due to his incisionĀ and he couldn’t relax because we had to hold a hand and a foot out of the water due to his IVs. But even with all that, oh how he smelled so good after that bath.

He was finally looking and acting more like himself and the BEST part was that he gave us some smiles!! I had been saying all week that I needed to see him smiling because that’s who he is. He is our smiley, lovey boy. I can’t even express the emotion I felt when he kept smiling and cooing at us! We knew he was feeling better, incision, wires, IV’s and all.

He also continued to poop throughout the day. It was such a relief to know that his organs were starting to work again. I’ve never been so obsessed with poop in my life. Every diaper change we would inspect the diaper before the nurses would weigh them. We just kept tabs on color, and consistency (TMI, I know). And it looks like that is something that I’ll be doing for the next few years.

IMG_6680Because he was pooping, we got the green light to start feeding him. He was allowed 1/2 oz of pedialyte every 3 hours. He hadn’t eaten in 3 whole days but I just had a feeling that he would not be happy that he could only have 1/2 oz. It was important though, to know that he could keep it down and that it could make it through his entire system. So we did that for a few feeds and then we upped it to 1 oz because he was tolerating it well. Then we had shift change. Once it was time for the next feed, I talked with my nurse and she said, “Ok I’ll go get the 1 oz of breastmilk ready.” I said, “Are we done with the pedialyte?” She looked back at the orders and told us that it never said to do pedialyte. The orders were always for 1 oz of breastmilk. Turns out when our day nurse, Tammy, had received the ORAL orders she was told to start with 1/2 of pedialyte. But the WRITTEN orders said 1 oz of breastmilk. Poor Tammy felt so bad about the mix up but it was no big deal. We were just excited that he could have breastmilk. I was praying he would tolerate it ok. We tried that night and he did great.

Written by: Kimber

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Kasai Recovery – Day 2

IMG_3169We were able to get a room at the Ronald McDonald Room here at Primary Children’s. That was so wonderful. They have queen size temperpedic beds. We slept so great but again we were up around 6 and just couldn’t go back to sleep. We showered, got ready and headed back to see the little man. When we saw him, he looked so much less swollen already! We were excited. He proceeded to pee so much throughout the day. And the difference in how swollen he looked was very obvious. We kept listening for bowel sounds and the day started with none. But by afternoon, our nurse said she could hear his bowels starting to work! We were so excited. Then came the insane amount of prayers for poop.

As we were sitting in our room, trying to stay sane with the craziness and boredom, we saw a familiar face. Shawn’s sister came by to visit us. She was so great. She helped keep our minds off of everything. While she was here, a social worker stopped by to talk to us. We weren’t opening up much but Shawn’s sister helped us start to be more honest with how we were really holding up. Pretty soon Shawn and I were both in tears. It’s really hard to be in the hospital day after day. You try to be strong so you can handle everything that the nurses and doctors are sending your way but all you want to do is cry and have someone else handle it. I just don’t feel like an adult. I kept thinking someone else would take care of it for me. Then you start building walls and becoming numb to your emotions to protect yourself. The social worker helped us break some of those walls down although they are building back up again.

I think this was one of the hardest days emotionally. While Beckett was doing so great, I was realizing that I was not. I was having a hard time processing everything. And trying to gather as much information as possible while not freaking out about everything. Knowing what our next 50 steps are but only worrying about the next step. It’s such a hard balance and will be something I have to work on for the rest of my life.

While we were talking to the social worker, Beckett started passing gas. He was acting a little uncomfortable and the gas just kept coming. Pretty soon we heard him poop! Oh man, we were elated. We were so excited about the poop that we came up with the idea to make a POO ghost. Around this time, the Child Life Specialist dropped by to check on us and so she was able to grab us some supplies to make our idea a reality. After we had made the poo ghost, we came up with Poo Points. We wrote down the names of the nurses, techs etc that helped us out. They could earn poo points for things like taking care of Becks, talking to us, answering questions or just doing something cool for us. We had so many staff at Primary’s who thought this was hilarious. Some even took pictures. And I will say that it created quite the contest between the nurses. It was a great way to laugh and take our mind off of everything that was going on.

Written by: Kimber

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The Cycle of Feelings

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Gray. Gloom. Bitter poison flowing through my veins. Anger. Pain. With each beat of my heart the cloud surrounding my senses grows darker and gains hunger for capture. Surrounded by positivity, prayers, and encouragement, I am alone. I’m on the island with others, I see them, I feel for them, but only feel myself. Frustrated. Numb. I open my mouth and nothing comes out. Where’s the words? Who will listen? Discouragement. Disappointment. I yearn for change. I close my eyes and hope. I fold my arms and pray. Why is this happening? Fear. Guilt. What do they think of me? They don’t understand. I need time. Selfish. Helpless. Let me look at you in the eyes. Tell me you are there and you’re ok. Show me a sign this is working. Hollow. Hurt. Nothing happens. More of the same continues. Strength transforms into mush. It trickles down my legs and out through my toes. My stomach turns sick. Sunshine. Warmth. Peace restored.

Ready?

Let’s go at it again.

Written by: Shawn

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Kasai Recovery – Day 1

IMG_6638The night after surgery we were able to get a parents room right next to the PICU (Pediatric Intensive Care Unit). It was a small double bed but it was a private room away from the beeping and constant visit of the nurses. We slept really well considering. Around 5:30 am we were woken up by a Code Blue. My heart leapt into my chest. Once we heard the room number and realized it was not Beckett, we were so relieved, yet our hearts sunk knowing what was happening. Sleep did not return. We got up. I pumped (which I’ve become a pro at this week) and we got dressed and headed over to the PICU to check on our baby.

He was so puffy and completely out of it. He had a hard time focusing. It was so hard to see him like that. We asked how he did and they said he did amazing. For pain relief, he was allowed to have a dose of morphine every 2 hours. Over the past 12 hours, he had only needed 2 doses. That was amazing! Right after surgery and he barely needed anything. The nurses were telling us about how some of these Kasai babies come in with a constant morphine drip and he barely needed any. As we were in there with him we noticed that he was sucking on his tongue for comfort. He wouldn’t take the bink and he couldn’t eat but man he could suck on that tongue like crazy.

Because he was doing so great, we were actually released from the PICU around 10:30 that morning. That was awesome to be able to move up into a regular room where we had more privacy and we could actually stay in the room easier with him. This was a hard day. He just progressively got more swollen as he had the IV fluids pumped into him. His skin started getting tight and his mouth and tongue were so dry. We had to keep wetting his lips with water and applying chapstick to help with that. He was just not himself. Very sleepy and very cranky. The doctors mentioned that an important next step was for Beckett’s bowels to wake up (sounds, passing gas, bowel movement etc). The nurses continued doing vitals throughout the day and every time they would tell us that there still were no bowel sounds. That was hard to hear. I knew it would take time but they just weren’t waking up and I had this fear that they wouldn’t ever wake up. That evening we wanted to hold him again. He had been sleeping most the day so we didn’t want to bother him but finally we just wanted him. To hold and snuggle him. So we had the nurse help us and Shawn sat in the chair. He got situated and then the nurse laid Beckett in his arms. Beckett started to scream. He just screamed and cried and after 5-10 minutes of trying to console him with no luck, we put him back in bed. He stopped crying. That was so hard. Looking at Shawn’s face, seeing that feeling of rejection. Oh how it hurt. We knew he didn’t feel good but it didn’t make it any easier to not be able to hold and love on your two month old baby.

Written by: Kimber

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Beckett’s Kasai Surgery

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We got ready to go and put Becks in his car seat. We then all knelt down for a family prayer. Partway through the prayer, Addie (our oldest daughter who is currently 4 years old) crawled over and pulled Beckett’s seat into the circle so that he was involved. Pretty soon we were all crying and I opened my eyes and Addie was looking around at us. Then her little eyes welled up with tears and she was trying not to cry. I got her attention and pulled her into my arms. She started sobbing. Once the prayer was over, we asked her why she was sad. “I’m sad because everyone else is sad. Beckett is sick. He has a broken heart.” We told her that it was his liver and that the doctors were going to make him all better. They were going to fix him. She gave him a hug and a kiss and said tearfully, “Bye Beckett. You’re going to be ok.” Oh that little girl has such faith and such a big heart.

We then headed up to Primary Children’s. We went to the surgical registration room and then waited for them to call our names. It was so hard looking around that room at the little kids knowing that they were all there for surgical procedures, whether small or big. It was a very tense room to be in. They called our names and we went in to a little room where they weighed him and did all his vitals. Then we had to clean him with these special disinfecting wipes and put him in a little surgical gown. In that room he looked SO yellow!

After he was dressed then came one of the longest waits of my life. We had to wait for the surgeon, the nurses and the anesthesiologist to come speak with us. We were probably in that room waiting for over an hour. Beckett had been fasting since 8 am so he was so hungry and by this point it was close to 1 pm. First came the surgeon, Dr. Scaife. He came in, briefly spoke to us, asked if we had any questions and then left the room to go get ready. We started feeling anxious about it all. A few minutes later, the surgical nurses came in. They told us about how they would give us updates every so often. Then they left to go prepare the operating room. After a couple minutes the anesthesiologist, Dr. Cole came into the room. She sat down and thoroughly explained how they would sedate him and what she would be watching for while the surgery was going on. She answered a few questions from us. She was wonderful. She made me feel really comfortable knowing that Beckett was in her hands. She then left the room to go see if they were ready for us. She told us it would be between 5 and 20 minutes before they took him back. But she was back immediately saying they were ready. I grabbed Beckett and we walked down the hall. It was the hardest moment for me. We reached this line on the ground and that was as far as we could go. I then had to hand him over to Dr. Cole. I kissed him and handed him to her. I immediately burst into tears. She looked at me and very sincerely said, “I have two babies at home. I know how precious he is to you. I WILL take care of him.” And then she walked away. Oh how my heart hurt so badly. I knew this wasn’t a super scary surgery in terms of dying but you just never know. The thought did cross my mind that I would never see him alive again.

We then checked in with the surgical waiting room staff. They really want you to be in that waiting room so that if there are updates, you are close. We told them we were going to grab a bite to eat and then would be back up. We met up with Shawn’s brother, grabbed some food and ate it and then headed back up to the waiting room. I realized that I needed to pump, so we asked where the best place would be and then roamed the hospital trying to find a place that wasn’t occupied. We finally ended up in the PICU. This was perfect because it’s where I would be pumping for the next day or so while Beckett was recovering. As we were in there, we saw some names on the board for patients that would be coming into the PICU soon. Beckett was up there along with some familiar names. We realized that it was Becky and Mona Cope, the mother who was giving part of her liver to her daughter. We had read an article about them earlier in the week. We couldn’t believe it. They were here at the same time. How crazy.After pumping was done, we headed back to wait. As we walked into the room, one of the receptionists was on the phone and said, “Oh they just walked in. Here they are.” Shawn answered, listened for a minute and then hung up the phone. I asked him what they said. It was the surgical nurse. He told us that Dr. Scaife had opened Beckett up and found that he did indeed have Biliary Atresia and that he was going to continue on with the Kasai. In a way it was a relief because we finally had an official diagnosis. Not just “oh it’s presenting as BA.” We knew. We had a game plan that we could finally execute. On the other hand, it sucked. It sucked knowing what our future would hold for us.

We then went to go wait until the surgery was over. It was Shawn, his brother Bryan and myself. We talked, ate Saltines and candy and played Five Crowns. It was a good distraction from thinking too much about what was happening to our little man. While we were playing the game, a woman walked by us on the phone. She went through a door right next to us which led to the stairs. Then she started talking. It didn’t take long to realize that she was talking about her daughter and granddaughter and she kept talking about their livers. It dawned on us. This must be Becky Cope’s mom. We couldn’t believe it. When she finished her conversation and came back in the room to go back to the waiting room, we couldn’t help but talk to her. We apologized for eavesdropping and then explained how we knew of her and why we were there. She was so helpful. She talked to us about how Mona was almost 4 and that the Kasai worked really good for awhile. She talked to us about how Mona was a happy little girl who lived a relatively normal life and did most of the things that other kids did. We felt so much relief. That was my biggest fear. That Beckett wouldn’t be able to do those things that other kids his age were able to do. She put those fears to rest (mostly). We thanked her and later on she sent Becky’s husband Landon to come talk to us. He was great as well. It was so nice to talk to other parents who know exactly what we are dealing with.

After about an hour or so of waiting, Shawn’s dad came up and joined us. And it wasn’t too long after, that we saw Dr. Scaife walking down the hall. He came and sat down to talk to us. He told us that Beckett was doing great and that they surgery went really well. He talked to us about how he went and looked at Beckett’s gall bladder and it was practically non existent. He cut it in half and it was just empty. Not working one bit. And then he followed the ducts from the gall bladder and they practically disappeared into nothingness. So it was clear that he has Biliary Atresia. But the surgery went as good as could be expected. Beckett didn’t need extra blood and just did great. Dr. Scaife then told us that it would be about 30 minutes to an hour before we would able to go see him in the PICU. Words cannot describe the flood of relief I felt that Becks was ok. This man saved my baby’s life. Such an amazing feeling.

I was terrified to go see him. I knew he would have a giant incision. I knew chances were good that he would have a breathing tube down his throat. I knew he would be super out of it. I knew he would be swollen. We got the call that they were ready for us. I prepared myself for the worst. We went into the ICU and met George. He was the ICU nurse taking care of Beckett. And then we saw our little guy. No breathing tube. Not terribly swollen. The incision not as big as we were previously told. Oh how he looked SO good!! Shawn and I looked at each other and we both started bawling. We just clung to each other and were so grateful that he was alive. He was ok.

Even though he looked so much better than I could have imagined, it was still so hard to see him like this. He was so out of it but would still cry and moan as he was restlessly moving. Oh those little noises hurt my heart so much. I just wanted to take the pain away. We asked our PICU nurses when we could hold him and they said we could hold him anytime we wanted. I told them I wanted to hold him right then. They went and found a super comfy chair and brought it in the room. They got me all situated and then they grabbed my beautiful baby boy and put him in my arms. It was such an amazing feeling. Almost better than the first time he was placed in my arms after he was born. Almost. I will NEVER forget how it felt to hold him. To touch him. To kiss him. To feel him breathing.

Everyone kept telling us how well he was doing. It was so encouraging but I also knew in the back of my mind that we have a long way to go with his recovery. And his life in general. But he is alive and he is ours. And we will take it one day at a time. One step at a time.

Written by: Kimber

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