Tag Archives: diagnosis

by | December 24, 2014 · 2:03 pm

Life is Everything but Routine

“So, they drained between 400 and 500mls of fluid. We are going to have him stay the night and monitor the output of his fluid through the drain. We should have him home tomorrow.”

“Just another routine stay right Dr. Book?”

She stops, turns around, looks up at me and says, “There is no such thing as routine. Each one of these kids is special.”

IMG_01655 miserable days later Beckett and I still find ourselves in the hospital. It’s Christmas Eve. It’s the most magical time of year and it feels anything but magical. If there is one thing I have learned from this hospital stay is that life as we know it is anything but routine.

There is a 2 year old boy from St. George, UT with Pneumonia in the room next door. St. George is roughly 5 hours away from Salt Lake City where Primary Children’s Hospital is located. He has a 1 year old little brother at home. Both his parents are here trying to get him home before Christmas. All he has to do is drink liquid orally and they can go home. He doesn’t want to.

Down the hall there is the most precious little girl who is just under the age of two. She was born with one kidney and has fought through hospital stays her whole life. They found out earlier this week that she needs a kidney transplant. They have been able to stabilize everything except one of her levels. If it stabilizes then they can return home to Idaho for Christmas.

Then there is Beckett. This boy has taken me to the cliff and brought me back from the edge. Only because of how much I love him. In the past 3 months we have now stayed 29 days/nights in the hospital. This stay out of all of the others has been the most painful and excruciating for me. I believe Beckett feels the same way.

IMG_0185Kim and I felt strongly that we needed to bring him into the hospital last Friday. We knew something was not right since Beckett’s demeanor changed drastically over a 24 hour period. Since then, he has endured being drained twice, daily blood work, IVs, a picc line, multiple antibiotics, change in diet, hydrating oxygen tube, and a catheter. For 4 days he wouldn’t sleep more than 1 hour for every twelve hours in the day. His breathing was strained, he ran a fever, and the only way to console him was to push him around the hospital in a stroller. I have never seen him so worn down and uncomfortable. In the meantime, nurses and doctors confirmed that something was wrong but didn’t seem to know the right course of action. When trying to address one issue, it would create others.

As a parent you can imagine the fear and frustration. You can imagine the pain I felt for my child who was suffering. I was confused. I still am confused. Regardless, slowly the anger snuck in. “Fix him! Figure it out!” Beckett’s behavior started reminding me of a visit we made to one of our liver friends who was teetering on existence in this life and how uncomfortable and irritable she was. I began visualizing my future with Beckett. The horror struck as I realized that this will one day be my constant reality and that Becks is only going to get worse before he can get better. I was not prepared for this life lesson and rude awakening.

I was praying constantly. So many people reached out and mentioned that they were praying as well. Yet Beckett, wasn’t getting any better. I began to feel like I was not praying correctly. “Maybe I am not worthy of God’s miracles” I thought. Why is Beckett not getting better? My faith began to crack. Doubt crept in. I felt the only way to be able to fix him is if I do it on my own. Yet, I didn’t know where to start. I am not a doctor. All I have is limited knowledge that has accumulated over the past 3 months. I knew I was missing something and I didn’t know what. I couldn’t see the clear picture. I wanted to scream and throw things. I remember just wanting to break something. At the same time, I knew that none of my desired temper tantrums would help.

IMG_0176Pondering Beckett’s scenario and racking my brain trying to come up with what God is trying to teach me, I realized that these feelings apply in so many scenarios. Knowing that you need a new career but not knowing where to start or where to go. Being turned down interview after interview. Understanding if you don’t get a new job your family is in jeopardy. Or having a loved one struggle with addiction. Doesn’t matter what kind. They are all consuming and life threatening. How do you help them? What do you say? Why do they keep doing these things despite how much you fast and pray? The list goes on.

Life is everything but routine. There are no official manuals or how to books that say “Do this and your whole life will be perfect!” However, there is a source of self dependency and humility that is required in these terrible situations. If you are not humble enough to admit you do not know what to do, that you need Gods help, and if you are not willing to grab the reigns and do your part then nothing is going to get better. I strongly believe it’s ok to be afraid, angry, and doubtful. Those feelings are normal as long as they drive you in the right direction towards results and hope.

We finally found the right direction with Beckett. He slept through the night and we are restarting his feeds today after withholding them for 24 hours. There are many obstacles that lay in this warriors path, but we will take them as they come. For now, we will give him what he needs and keep hoping and praying for the Christmas miracle.

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by | December 13, 2014 · 2:15 am

Quit Missing the Miracles

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I am lounging on the corner of the hospital couch. Kim is fast asleep occupying most of the couch on my left. I can’t blame her. Being beautiful ain’t easy! Beckett is sleeping comfortably in his bed to my right. It’s the first time this week that he has slept more than an hour without waking up. The only light in the room is from the glow of monitors that are pumping fluids into Beckett’s body. Outside the closed door of our plainly painted hospital room is the nurses station. I can hear them chatting it up and laughing. I feel comfort knowing they are so close.

These hospital weeks are brutal. I thought they would get easier. The problem with them is the tension starts long before the hospital stay begins. We have always had appointments on Wednesdays with our liver doctor. Monday rolls around and your body begins to tighten with anticipation. On Tuesday your stomach is sick and your head is wanting to explode from all of the unknown and “what if” scenarios that have been racing through your brain. Wednesday, your heart beats outside your chest and you have a shortness of breath because you know something bad is going to happen.

IMG_0126This week for some reason has been unusually harder than others. The initial shock of Beckett’s liver disease has officially come and gone and now we are facing the bare bones reality of it all. I am feeling overwhelmed from the stressful/emotional roller coaster. From good news that Beckett’s Kasai surgery is working to bad news that Beckett has Portal Hypertension, which could cause him to need a transplant sooner even though his surgery is draining bile from his liver. Good news that Kim can start breastfeeding again to bad news 24 hours later that leads Kim to decide to stop breastfeeding entirely. Good news that “you’ll go home tomorrow” to bad news of “it will be three more days.” I watched our doctor drain 16.5oz of ascites fluid from Beckett’s abdomen. I have been covered in multiple ounces of throw up on several different occasions. Tomorrow I will learn how to stick a feeding tube up my sons nose and down his throat into his stomach.

It is not uncommon that when we are in the hospital we receive extremely encouraging words and support from friends and family. Most often these messages come via Facebook and Instagram. These notes of love keep us going and help us see the positive in all the negative. Today I received a text message from a friend that said:

“Just when all seems to be going right, challenges often come in multiple doses applied simultaneously. Those trials are not consequences of your disobedience, they are evidence that the Lord feels you are prepared to grow more. He therefore gives you experiences that stimulate growth, understanding, and compassion, which polish you for your everlasting benefit.”— Richard G. Scott

IMG_7344 copyIf I step back a minute from liver disease, discussions of transplant timeframes, vomit, and feeding tubes I can count the blessings of all that is going right. I can see the growth that Kimmie and I have experienced. I can take pride in what I am doing and what I have learned. I can feel comfort and peace from the prayers of hundreds who are reciting Beckett’s name in personal and family communion with God. That is a miracle! I question. How many miracles have I glanced over because I have been selfish and not compassionate? Would this week have been better if I had opened my perception up to greater understanding? Have I disrupted my own spiritual growth pattern because I have chosen to be comfortable with my attitude and daily routine?

Tonight as I ponder how miserable my week has been, my feelings turn to gratitude for the reminder that I received today from a friend. I am grateful for why these hospital stays are hard. I take pride in understanding that my Father feels I am prepared and ready to grow. It’s not fun and it’s not something I wake up in the morning and look forward to. It’s hard. Growing pains are uncomfortable and unlocking true understanding is going to take some practice. It’s a challenge and I don’t know if it will ever get easy. What I do know is that I don’t want to miss the miracles that are taking place all around me.

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by | November 5, 2014 · 11:59 pm

Beckett’s “Simple” Follow Up

(null)The past two days have been hard. Really hard. I’ve been looking forward to and completely dreading Beckett’s follow up appointments. I wanted to know how he was really doing but at the same time I was terrified to know exactly what our future looked like. We had two appointments set up. 10:30 am with the surgeon, Dr. Scaife, and 1:40 pm with our liver doctor, Dr. Book.

Today arrived. I prayed really hard for peace. I just wanted to feel peace no matter what news we received. When I woke up, I was feeling pretty good. Apprehensive but good. We packed an overnight bag just in case, got the girls settled and packed the baby in the car. We drove up to Primary Children’s. As we started driving, it was silent. Too silent. So we turned on Taylor Swift’s new CD and jammed. It helped take my mind off of the day. But the closer we got to the hospital the more ill I felt. I was so nervous.

We headed up to general surgery and checked in. They then took us to get some labs done. Sweet Beckett was quite the charmer as the nurse prepped his foot to get pricked. He bled good for her and then we headed back to general surgery to meet with Dr. Scaife. As we waited in the room for him, we noticed a mural on the wall. There was a saying on it that if we looked closely we could see all the letter A to Z. We spent the next 15 minutes trying to find the letters. They may have designed that for kids but 1, it was hard and 2, it was a great distraction for us as parents.

Dr. Scaife walked in. “How are you guys?” We smiled. “You tell us.” We laid Beckett on the table and lifted up his shirt so Dr. Scaife could look at his belly. He told us that his belly looked distended and he wanted to send us to get an ultrasound to figure out what was going on since it could be several different things. We asked about his incision. He told us that it looked fabulous. No issues there. Perfect! The lab work still hadn’t come in so he told us we would have to wait until we saw Dr. Book. We headed out to the main room to see if we could get in for an ultrasound. I don’t know how we lucked out but we were sent straight down to radiology for the ultrasound!

When we got there, our tech, Brad, called us back. Now Brad was the same tech that did his initial ultrasound exactly 4 weeks ago today. It felt nice to have a familiar face. Brad is awesome. He asked us questions, did the ultrasound quickly and laughed at all of Shawn’s jokes. Shawn made some comment in regards to how much money the surgeon makes and it made Brad laugh so hard that it took him a good couple minutes to compose himself to continue. That’s one thing I’m so grateful for. Shawn knows how to keep things lighthearted even in the midst of massive stress. Laughing our way through all this crap makes it a little easier. As Brad was doing the ultrasound, he told us all the black on the screen was fluid. I’m no tech but even I could see that there was way way too much in there. I immediately started kicking myself. We’ve been measuring him everyday and the measurements didn’t change until the past day or two. So what was I doing wrong that he had that much fluid and we couldn’t see. I’m not cut out for this.

After the ultrasound was over, the head radiologist came in and talked to us about the results. He said that in his opinion there was a “large amount of fluid” and he thought that Dr. Book would most likely want it drained. In order to drain it, Beckett would need to fast for 6 hours. Well here it was noon and he hadn’t eaten since 9 am. So I figured our appointment with Dr. Book was in two hours. It wouldn’t hurt to hold him off in case she did want it drained. Then we would already be ahead of the game. We left and went to get some lunch before our next appointment.

After we ate, we just sat for a minute. It was hard to know what to say. We still felt clueless. All we knew was that his belly had tons of fluid, something could be massively wrong and we had no idea how well the surgery was working because the labs weren’t in. We decided to head up to Dr. Books office early just in case they could get us in. While we waited we looked over the valley and tried to sort through the limited information we had. Soon enough it was our turn.

We headed back to the room and before anything was done, they went and grabbed Dr. Book. The radiologist had seen her on her way over and told her about Beckett. At this point, our appointment turned sideways. Instead of talking with her about things, all the sudden she was there telling us that we were headed back down to radiology to get his belly drained, they were going to place an IV and we would need tons more blood work done. Then we would be sent to the RTU (Rapid Treatment Unit) to recover and wait for results. Most likely we would stay overnight.

Before we headed down we asked our liver nurse, Holly, a bunch of questions. She was great as we tried to process what was happening. I asked her about his bilirubin levels. Before his surgery his levels were at 8.4, now three weeks later they were at 7.4. I’m not a doctor but that difference doesn’t seem that great. Dr. Book came back in and got us moving since radiology was waiting for us.

Back down to radiology. We went into a little procedure room and that’s where we met the doctor who would be performing the draining procedure. It’s also where Beckett got his IV. The nurses came in to do the IV and went straight for his head. They didn’t even try in his hands or feet. He screamed bloody murder and I sobbed in the hallway.

IMG_6945[6]After the stupid IV, they took us into this big room, the Jazz room. There are pictures of all the Jazz players, signed sports memorabilia and the ceiling tiles have all the signatures of all the players, past and present. It was pretty awesome. They got Beckett situated and then took us to a waiting room. Through all this I hadn’t been able to feed Beckett. But I had no idea that this was going to happen so even though we were prepared with overnight bags, I did not bring my pump. No big deal I thought, I’ll just use the hospital stuff. Nope. In looking into it, because what we were doing was an outpatient procedure and we would not be admitted even though we were staying overnight, it would cost $100 to use the hospitals stuff. Yeah, not happening. So I dealt with the pain until I could feed Beckett again.

The draining itself was actually super fast. Like 20 minutes and they were back to get us. They said that they drained 460 mL from his belly which equates to about 15.5 oz. and there was more in his tummy. He was awake and they said he did awesome. He never cried, just hung out. He was looking around and was calm until he saw me. Then he started screaming bloody murder. The Dr. said I could feed him since he was doing so great so we walked to the RTU and got into our room and I started to nurse him. Oh how quickly he calmed down. We just let him rest and hang out and had to put a sock over his hand so that he wouldn’t pull the IV out from his head. Then we waited.

After a couple hours, Dr. Book came in to talk to us about everything. She said that the fluid they took out of Beckett was milky. They tested it and determined that during his surgery his lymphatic system was damaged. There is fat from his food leaking through the lymphatic vessels. Then she proceeded to tell me that in order to fix the problem, I can’t nurse him anymore because breast milk is super fatty. He needs to be on a special formula. And if he won’t take the formula then they will put him on a feeding tube until his lymphatic system is healed. I am devastated. She said that its temporary, maybe 3-4 weeks but that’s a hard pill to swallow. That your milk is actually causing the damage to your baby. That the comfort and bonding that your baby enjoys can’t happen anymore. Pumping and saving my milk to hopefully nurse him in a month is the only solution. That was hard to hear.

She then felt his belly and said his spleen was enlarged. This could be from the pressure of his liver and the fluid. Not a great sign. I asked her where they want the bilirubin levels to be and she said under a 4. We’re at a 7.4. So that’s not super optimistic. She said she was going to keep an extra close eye on him. She then told us we would be staying overnight to get the rest of the fluid drained and to make sure he was taking the formula. And that we would be back next week for follow ups. She encouraged us, told us we would get things under control and that he would be ok, whatever course that may be.

IMG_6950I love Dr. Book. She never skirts around the issues but she is a glass half full person. She already cares about us and will do everything in her power to help Becks. I hate this situation. I’m not handling it well. But she gives me courage. I know Becks is being taken care of. And for that I am and forever will be eternally grateful.

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by | October 13, 2014 · 8:00 pm

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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by | October 10, 2014 · 4:00 pm

Beckett’s Diagnosis Confirmed – Day 3

We slept much better that night. I got at least 5-6 hours. Once about 5 am hit, we were up. Because they did a liver biopsy the previous day, it was going to take a day or two before we would get those results. They told us that we would be able to be released for the weekend and then we would come back on Monday for the surgery. When the doctors did their rounds, they came and talked with us again. They said that so far based on the x-ray, echo and the initial results that they could see with the biopsy, that things were pointing to Biliary Atresia. The chest x-ray showed no butterflying of the discs in the spine. The heart murmur is a typical newborn murmur that a lot of kids have. And the liver looks fairly damaged but not so bad that it absolutely pointed to BA. But again nothing was confirmed. Dr. Book still wanted the eye exam to further rule out Alagille’s.

The eye doctor came and did a quick glance and said that his eyes looked good. Then he put drops in to dilate the eyes and used these horrible metal clamps to keep his eyelids open to be able to see in the back of the eye. His eyes showed no markers of Alagille’s. Deep down we knew they wouldn’t either.

At this point it was pretty much confirmed, Beckett had Biliary Atresia and the surgery for Monday was now imminent.

Written by: Kimber

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by | October 9, 2014 · 8:00 pm

Beckett’s Diagnosis – Day 2

IMG_6552I was woken up by the nurse just before 4 am so that I could feed Beckett before he had to fast for four hours until his echocardiogram which was supposedly scheduled at 8 am. Beckett was also born with a slight heart murmur so they needed to make sure it wasn’t anything significant in case he needed surgery. They needed the whole picture before we moved forward. So 8 am came and went. Beckett was getting pretty hungry and pretty soon our day nurse (Her name was Melissa and she was phenomenal. The first nurse who I felt was advocating for us.) came in and asked if we were getting a liver biopsy. I told her that as far as we knew that was up in the air. She replied, “Well he doesn’t need to be fasting for the echo so if they aren’t doing the biopsy there is absolutely no reason why he can’t eat.” She left to go check on that. Soon she came back and said that we were on the schedule for a liver biopsy around noon. I was so mad. Now we had passed the point of the four hours before the procedure but he could have eaten at 8 am!!! So here he was, starving and I couldn’t do anything about it. Around 10:30, we were told that they decided to combine the echo and the liver biopsy together to make it easier on Beckett. I was grateful for that but they pushed it back to 12:30/1:00. Poor baby was so hungry.

While we were waiting, the liver doctors did rounds. While they were with us, they mentioned that the combo of the liver issues and the heart murmur could suggest another condition called Alagille Syndrome. If that was the case then there wouldn’t be surgery. So not only did they want to do the biopsy and echo, they also ordered a chest x-ray and an eye exam. There are physical markers that they can look for to confirm Alagille’s. The discs in the spine can look like butterflies. And there are eye defects that can visibly be seen. I started looking up Alagille’s and while I loved the idea of no surgery right now, the syndrome comes with lots of issues, some developmental that I didn’t want Beckett going through. And they end up needing transplants as well. It was hard hoping that the test indicated that he had BA and needed surgery.

Around 12:30 they came and got us to take us down to get the echo/biopsy. We had to sign consent for them to sedate him. So hard to talk to anesthesiologists about sedating your child. We passed him off to the doctors. They told us to go to the surgical waiting room and they would let us know when he was finished. It would be just over an hour and we would be able to go to him as he was coming out of sedation. We walked by the surgical waiting area and it was so depressing so we went downstairs and had Shawn’s brother bring us some lunch. We just chatted for a bit and then Shawn’s phone rang. He got up thinking they were telling us that Beckett was finished. It was Dr. Book. “Where are you?” Shawn replied, “At the cafe at the front of the hospital.” Dr Book, “Stay there. I’m sending a surgeon to talk to you.” Click. Panic ensues. With terror filled eyes, Shawn came over and got me. All I could think was that something went wrong and that’s why the surgeon was coming to talk to us. After a minute we saw a man who had to be the surgeon. He was carrying lots of papers. My heart sank. He introduced himself to us and we all sat down. After 2-3 minutes of talking to him, we realized that this was just a consult in case Becks did need the surgery. We were just getting it out of the way to streamline everything. You can’t even imagine the relief I felt that it wasn’t an emergency.

Dr. Eric Scaife was going to do the surgery. He sat us down and drew diagrams and went into detail about what he was going to look for and do. He told us that he would start with a dye study. He would inject dye into the gallbladder and if the dye went up into the liver then he would stop immediately because that means that the ducts are functioning. If the dye doesn’t go into the liver then he would continue with the Kasai. He also gave us some statistics on the surgery. He broke it basically into thirds. 30% of the time, the surgery doesn’t work at all. We would need to go straight to a transplant. 30% of the time, it works and then doesn’t work. That means it could be 2 or 5 or 10 years before it stops working and we go to transplant. 30% of the time it works. Realistically that just means that it’s a long time before it stops working and he needs a transplant. (Don’t ask about the other 10%, we aren’t sure what that is.) After he explained the surgery, he gave us a consent form to sign if we felt comfortable about moving forward. It’s weird having to sign something like that knowing that if you don’t sign, your child could die.

After talking with Dr. Scaife, we got the call that Beckett was ready. We went and saw him. He was pretty out of it but was doing well considering. We got him back to the room and I was finally allowed to feed him. It had been almost 12 hours!! We hung out in our room for awhile until it was time to go down and get the x-ray done. Once that was finished, we were done for the day because we missed the eye doctor while Beckett was getting the echo/biopsy.

I should mention that at this point we had dealt with lots of nurses and doctors. We had great experiences with pretty much all of them. They took great care of us. We especially became close with one of the tech nurses named Alysha. She was amazing! She would actually talk with us and love on Beckett and I now consider her a great friend.

Written by: Kimber

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by | October 8, 2014 · 8:00 pm

Beckett’s Diagnosis – Day 1

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I woke the baby up at 7 am to feed him before he had to fast for four hours for the ultrasound that we had scheduled. We arrived at the hospital at 11 am and got checked in. Then we got called back to the ultrasound room. The tech (Brad) was great. He was really nice and helped us feel comfortable. Beckett had to lay there for about 45 minutes while we did the ultrasound of his liver, ducts, and gall bladder. He did amazing! Shawn just laid his hand on him and helped him keep a binky in and he did so well lying still. The tech was impressed. After the initial pictures were taken, the radiologist came in and looked at everything before they sent it over to Dr. Books (the liver specialist) office. We could hear the tech and radiologist talking but couldn’t really understand everything. I thought I heard them say that they couldn’t find his gallbladder at all. It was really scary not understanding what was going on. After they finished talking, we were done and were to head straight to Dr. Book’s office. We took a quick pit stop so I could feed Beckett and then we headed over.

We got to her office, checked in and got Beckett undressed for measurements. Then came one of the most painful waits of my entire life. Because this was a last minute appt and there was no set time, just a head over when he’s finished, we had to just wait for them to get to us. On the one hand it was super frustrating sitting there for over an hour but at the same time we were just so grateful to be able to get seen so quickly especially if this turned into something scary. We still had hopes that it was something quick and easy to take care of. Beckett was amazing. He just hung out and was as cute as ever.

Then one of Dr. Book’s associates (Krishna) came in the room. We did a thorough history and he checked him out. Then he went and consulted with Dr. Book and shortly after that, they came in the room, along with Brooke who is the liver coordinator at Primary Children’s. Dr. Book sat down, introduced herself to us and then it was straight to business. She said based on what they had seen so far she was fairly sure that Beckett did indeed have Biliary Atresia. She pulled up a chart and started to explain what that meant to us. Here is the basic idea. You have your liver. Coming out of the liver are a series of ducts that connect the liver to the intestines. This is how the liver drains the bile. If Beckett did have BA, then that meant that those ducts were either missing or severely damaged. Thus no drainage. The bile was just building up in his liver and that was causing the jaundice. It causes liver damage because the bile is toxic to just sit there. If that was the case then we would need a surgery called the Kasai. They would cut his small intestine and connect it directly to the liver, essentially bypassing the ducts. Then the part of the small intestine that connects to the stomach would be sewn back to the piece now connecting to the liver.

We were stunned. And overwhelmed. And confused. We asked questions about what that meant for his life. We learned that the surgery is just a band aid. If we don’t do the surgery, he would die or need a transplant within the year. If we did the surgery then it buys us time. Time for him to get bigger and stronger. This would allow the pool of donors to be larger. We both were sobbing. It was the hardest thing I have ever had to process. Dr. Book was amazing. She said we needed to run further tests to confirm the diagnosis. She wanted us to be admitted to the hospital so that we could streamline the process since the surgery is time sensitive. They won’t typically do the surgery after the baby is 90 days old because the success rate goes way down. So she wanted to jump on it. She reassured us that it was going to be ok and that they would take good care of us. She then turned us over to Brooke. She was amazing. She helped us get admitted to the hospital and told us that she would be there every step of the way through all the craziness. We were so overwhelmed but were so grateful for the help that we were receiving.

After the appointment, it took a little over an hour to get admitted to the hospital. We had to wait until a bed was ready for us. We ate some lunch, called our parents and cried a lot. Finally we were told that our room was ready and we could head up. It was late afternoon by the time we were admitted so the game plan for the rest of the day was to take a bunch of blood and also start an IV. It was hard watching them do the blood again, and again, and again but the IV was the worst. We asked if they could do it in his foot because he loves sucking on his hands. They tried one of his feet and it didn’t work. So then they moved to his hand. Again it didn’t work. Finally they tried his other foot and it worked. He just screamed and cried the whole time. And kicked. He kicked a lot and the nurses kept commenting on just how strong he was. All I could think of was how grateful I was that he was big and strong because if he needed surgery then he would need that strength.

He did really great. Even with the IV and the monitors that he was hooked up to, we could still pull him out and hold him. That was so nice to be close. We also blessed Beckett. We were told that surgery was imminent and didn’t want to wait until after. I wanted him blessed before. So we had a few family members come up to the hospital and we were able to bless him. It was really special. I’ll do another post on that later. That first night in the hospital, we slept horribly. I got ONE hour of sleep. The rest of the time was spent praying, crying and thinking. I was trying to process just how much this was going to change our lives. And how scared I was for the surgery.

Written by: Kimber

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