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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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Filed under Beckett's Battle

I Am Not Forgotten

I hesitate to post this. I hesitate to share the reality of my life sometimes. Because it’s not always pretty. I hesitate because I worry what people will think of the way I react to situations. But it’s my truth and sometimes I just can’t keep the thoughts in. So here it goes.

We’ve been home for two days. And they’ve been rough. Within hours of being home, we managed to clog Beckett’s feeding tube. The medicine was just too gritty but being newcomers to it all, we didn’t even think about it. We tried to flush the tube. No luck. Pretty soon we were both so frustrated. What do we do? Do we pull it out? Do we call someone? Meanwhile, it’s 9:30 and our girls are running around crazy. Beckett is starving and crying. We feel frantic. Do something. We start blaming each other and our words get harsh. We get mad at the girls. Finally they are in their rooms. We pull his tube out. Completely clogged. I spend five minutes unclogging it. Now what? We need to start his overnight feeds. Frustration is mounting. I finally just put the tube in. We get the feeds going. Relief for about 30 minutes until Beckett becomes restless and starts having a hard time. His belly is not adjusting well to the overnight feeds. We get him to sleep and crash ourselves. He wakes in the middle of the night and pukes. I rinse out everything and clean him up. Shawn helps get him situated. We are exhausted.

Morning comes and we get going and Shawn goes to work. I’m on my own. I don’t sit down all day. Our next night is not better. After a day of running around and feeling tired, we get home late from a family Christmas party and it starts all over again. We are at our wits end. We get his feeds going and get the girls to bed and it looks like we might actually get some much needed alone time together. But Beckett won’t fall asleep. He is writhing in his bed crying. He is so tired. We try everything. More food. Binky. Lavender lotion, Rocking, Sshhing. Gas Drops. Nothing will help him. We strip him down and lay him on our bed, trying to calm him. Two hours later, he finally settles down. We fall asleep, angry and exhausted. Beckett wakes up at 5. He has blown out of his diaper. All over our bed. We take the sheets off and clean them up. All the sudden he starts vomiting. More time spent rinsing and cleaning and soothing this sick baby who is struggling. More angry words at each other. We are stressed. A couple more hours of sleep. Once we wake, Shawn gives Beckett his meds and he throws up again. I cry. I can’t do this. Shawn has to leave to work again.

The girls need me. Beckett needs me. But I’m angry. And exhausted. I’m confused and my mother heart aches for this sweet baby who is suffering. The girls argue a bit and I lose it. I completely broke down sobbing and yelling. Yelling at the girls for fighting. Yelling at God. He gave this trial to the wrong person. Trials are supposed to bring you down to ultimately help you grow and become a better person, more Christlike, with more empathy. But this trial is not doing that. It is breaking me and turning me into someone I do not want to be. So I was angry. And then the guilt set in. How can I treat my children this way? Why am I not stronger? Why am I such a brat to my husband who is just trying to help? Guilt leads to depression. Why do I feel so alone? Why am I forgotten? Why is God not helping me? Why can’t anyone see and understand this pain and hurt I feel EVERY day? It’s Christmas time and it’s supposed to be magical and wonderful. It’s not. It is stressful and frustrating and scary. I look at the world going on around me and all the joy and I feel so forgotten and lost. I plead with my Father, please help me. Please do not let me drown. Please do not let me shrink. Please save me.

After hitting rock bottom, I start taking care of the things that need to be done for the day. My head pounds and my eyes ache. My doorbell rings. It’s a dear friend. She takes one look at my eyes welling up with tears and asks if she can come in. All she came to do was drop some coloring books off for the girls but oh how I needed her. We talk for hours. In that time span several other friends reach out to see if I’m ok. Later on I talk on the phone to another good friend. Another friend reaches out to see if the girls can come play. All of these women say things that I need to hear. They validate my feelings. They address my deepest fears without me saying anything. They love me. I am not forgotten.

My hard days are just beginning. It feels terrifying to know what we have in front of us. I feel like I will not be able to handle it when I have a hard time with these minor things. I know many tears will be shed. But my Father in Heaven showed me something today. He will not take my hard days away. But He has not forgotten me and he will prompt others to reach out so that I always feel His love. And those little texts, or calls or drop by’s show me that I am not forgotten.

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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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Filed under Beckett's Battle, Perspective