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Our Transplant Journey

Last weekend was such a wonderful one. I never want to forget the events that transpired that led to our son getting his second chance at life. I woke up the morning of Friday the 12th in the best mood I’ve been in for a long time. I just felt so good. Life was wonderful. I was seriously bouncing off the walls. It was our anniversary so I thought that could be the reason why I felt so happy. I said my morning prayers and spoke to my Father about how today would be an amazing day for a new liver since it was our 7th anniversary. The girls woke up and we started on our day together. Periodically throughout the day, Shawn, who was at the hospital with Becks, would text or call. I kept telling him how happy I was and he kept telling me to calm down. I couldn’t. It was pretty funny. Partway through the morning, I felt like I needed to go to the hospital on Saturday and spend the day. Usually I take the weekend at home so that I can be at the hospital during the week to allow Shawn to go to work. I’m never at the hospital on Saturday. But I felt strongly like I wanted to spend the day with my boys. I arranged to have the girls stay with their Aunt and cousins Friday night for a sleepover and then stay and play all day Saturday. Around 6 pm I dropped them off and grabbed a bite to eat. I kept texting Shawn how happy I was and excited about life. Life is beautiful. He seriously thought I was crazy for being so happy when our son was so seriously sick in the hospital. I told him I would be up to the hospital really early in the morning. After I ate I didn’t know what to do and I was still so excited and hyper. Shawn suggested that I do some service for others. And immediately the thought came to mind to make cookies and write some notes to a couple neighbors and friends who have made a difference in my life lately. I dropped them all off and everywhere I went they would ask how we were doing. I just kept saying, “I’m amazing! I feel so good about life. I’m so happy!” I probably looked a little crazy. I spent time talking with a friend and then went home to bed. I went to bed at midnight, looked at the clock, sighed with a little smile on my face and then said my evening prayers. I said to my Father that even though we didn’t get a new liver, the day had been amazing and I was so grateful for the peace and joy that I had felt. I told Him that I wanted to keep that feeling as we continued to wait.

Saturday morning rolls around and I was up pretty early. I felt so sick to my stomach. I was nervous and anxious to get to the hospital. Shawn sent me a picture of him and Becks saying they were excited to see me. I got my belongings together and headed up. I walked into the ICU and over to Beckett’s room. Shawn was standing at Becks bed and looked at me. “It’s going to be a great day, ” he said with a grin and tears in his eyes. I immediately started crying. “Are you kidding me? Are you serious?” He grabbed me and pulled me into a huge hug. “I guess that’s why I felt so happy yesterday,” I said.

*Side note. How we got “the call” is actually pretty humorous. Because it’s so us. They called the hospital room where Shawn was staying with Beckett. The call came in at 3 am. Now those who know Shawn know that he can sleep through anything. It’s one reason why he does better here than I do. He can sleep through the beeping and the nurses coming in and out. Ask any of our nurses; they’ll tell you just how deep he sleeps. So the phone rings at 3 am. Shawn sleeps through it all. The resident got our call but didn’t wake him up. Morning comes and our nurse told Shawn that the resident wants to talk to him. Now we had been pretty worried about some labs the day before so it made Shawn nervous that she wanted to speak to him first thing in the morning. Shawn starts getting ready, completely oblivious to what was actually happening. He walks out of the room to go to the bathroom and a doctor was sitting right outside our room. He says to Shawn. “It’s going to be a good day.” Shawn was thinking, “Uh, ok.” After he got back from the bathroom, the resident walked in and informed him that we had the offer.

The rest of the day is a blur. We had so many doctors and nurses in and out of his room. They ran a full panel on him checking his urine, stool, and blood. They drew so much blood from him to check just about everything you can imagine. He had a chest x-ray, and numerous consults from cardiology, nephrology (kidney), hepatology (liver), anesthesiology, and of course the surgeons. We also had someone come by to ask for our consent to take a piece of the old liver to study it. Of course, we said yes! We hope that something good comes from that bad liver. It was such a busy day and yet went by so slowly. When we spoke with the surgeon he told us that his colleague was flying out to check the liver. He said that they could cancel the transplant at any time especially once they see the liver in person. But they all felt very good about it. We also found out the liver was O+ and was the perfect size for Beckett. What a miracle!! All the scary talks of cleaning his blood to be able to accept a different blood type now didn’t matter because we wouldn’t have to do that with a perfect match blood type. Around 3 pm we were told that they were on the way back and they had the liver with them. At that point we started telling our families. The OR time was originally set for 5:00 but got bumped back until 5:45. We didn’t end up taking him in until just after 6.

The hardest moment is kissing him good bye and watching the doctors and anesthesiologist wheel him away to the OR. That’s when I lose it every time. I trust them. I know they will take good care of him. But so much could potentially go wrong. It’s terrifying. Shawn and I cried and then walked outside to be alone and process. We sat outside the hospital. I texted a friend to come up and keep us company while we anxiously awaited for updates.

Through the past 8 months of near constant hospital stays, we have made a lot of friends at the hospital. Nurses, residents, attendings, ultrasound techs, interventional radiologists and other staff. As we waited outside of the hospital we saw so many people that we knew. And it was SO good to hear them ask about Beckett and be able to tell them that he was in surgery right now receiving his new liver. Once it got dark we headed inside to wait. We ordered pizza and settled in for the long haul. Thankfully our friends helped keep things light so that we could talk and laugh and it didn’t seem too stressful. After about an hour of waiting we received our first update. Beckett was prepped, sedated and they were about to start the actual surgery. The next call came two hours later. Still working on getting the old liver out, the new liver was cleaned and ready to go. Another two hours. Old liver out, new liver is being worked on. After that we got our last update. New liver is in, blood circulating, making sure there were no leaks and that everything is taken care of. And then the call that he would be going to the PICU (pediatric intensive care unit). Our surgeon called a little while after that to tell us that he did great and was stable through the whole thing. Everything looked good and we could go see him in just a little while. By this time it was just after 1 am. Our friends left. We walked up to the PICU waiting room and FINALLY at 2:45 am they said we could come see him.

I was nervous. We knew what to expect but I was a little afraid to see him. We walked to his room and there were so many people settling him in, preparing all his pumps of meds and fluids, cleaning him up etc. We were hesitant but walked over to him. We were shocked. In the 8 hours since we had seen him, he was already pink. I didn’t see anything else in that first moment. Just his skin that was already changing. After that wore off, I started to take in a mental image of what I was seeing. He was limp and still very sedated. He had a breathing tube, 3 drains coming directly from his abdomen, bandages over his huge incision, a bloody bandage on the right side of his neck and an IJ line (inserted into his jugular vein) on the left side of his neck. He was a mess. But he was so beautiful!!

Photo Jun 14, 3 08 10 AMWe stayed with him and got him situated and cleaned up. I stroked his head and arms. I was in awe of this perfect little creature. Around 3:30 I decided to get some sleep. Shawn stayed with him and slept by his side. I wish I could describe the feelings that we felt that night. I think I experienced every emotion you can imagine. Fear, worry, joy and utter relief. Oh the relief. It was as if a gigantic weight had been lifted from off our shoulders. Our little man would be ok. We are blessed.

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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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