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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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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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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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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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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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The Beginning – 2 Month Appointment

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A lot of people have asked how we got to this point. After Beckett was born his bilirubin tested a little high. It wasn’t that high but enough that we needed to come back in a couple days and get him retested. We came back when he was three days old and got retested. The levels came within the normal range so we went home and didn’t think about it. At Beckett’s 2 week appointment, the doctor commented that he looked a little yellow but neither he nor I was concerned. After that it seemed like Beckett’s eyes got more white so I figured that his bilirubin was finally going down. A couple weeks before he turned 2 months, I started to notice that he looked really yellow. I started to see it in pictures and could really tell sometimes in his eyes. I had the 2 months appointment set up already so I decided to bring it up at the appointment.

On Monday October 6th, I got mastitis. I was so sick and nauseous and had hot and cold flashes. I was so miserable. But I didn’t want to reschedule his appointment because I was feeling concerned. Because of all that I asked my mom to come with me to his appointment and I am so grateful that was the case. I could not have handled all of what happened by myself. We showed up at the appointment and the nurse asked if I had any concerns. I said I did. When the doctor came in he said, “So you have some concerns?” I said, “Yeah, he’s yellow.” My doctor replied, “Yep, he’s really yellow. That was the first thing I noticed when I came in. I don’t like it at all. It’s super concerning.” My heart sank. I thought it would be an easy fix, bili lights or something. But I could just tell that it wasn’t good. My doctor said he was concerned about Biliary Atresia. He then said, “Don’t you dare google this until we confirm that’s what it is.” He then told me I needed to go to the hospital to get some bloodwork done and that he would make some phone calls. He said I would hear from him the next day to get the results of the labs.

My mom and I took the kids over to the hospital. The nurse gave me a heat pack to put on his heel so that we could just do a heel prick for the blood draw. Once we got called back the nurse looked at Beckett and said to me, “I don’t think we can do a heel prick. We need too much blood.” My heart sank. We then went to the back room and I had to hold him down while two nurses tried to draw blood. They blew a vein in his one arm and had to go to his other arm. It was so sad!

After the hospital, we went home. I tried not to cry but the fear of what could possibly be going on was so scary for me. I tried to keep busy knowing that we wouldn’t be hearing anything until the next day. I called Shawn at work and he came home. We both were really distraught and then we got a phone call from our pediatrician. He had already received the results of the blood draw and was really concerned. He had called up to Primary Children’s and just happened to talk to THE liver specialist, Dr. Book. She was really concerned about the labs as well and told him that her office would be reaching out in the next day or so to make an appointment. We hung up the phone with him and immediately got a call from Dr. Book’s office. They wanted us in the next day Wednesday the 8th at 11 am for a liver ultrasound. They told me that he had to fast for 8 hours but then changed that to just 4 hours which I was so grateful for. We got directions to the hospital and then hung up the phone.

I remember feeling so helpless and confused. I had no idea what was going on, just that I went in for a 2 month well check visit and now I had appointments with really big Doctors and there was talk of a possible surgery. It was so scary. But I had no idea just what we were in store for.

Written by: Kimber

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