Pediatric Liver Transplant - Children's Hospital St. Louis

Malakai was born on September 24, 2008. We brought home a bouncing baby boy who passed all his newborn tests. But three weeks later, he started to develop jaundice of the skin and eyes. I called his pediatrician who recommeded I bring Malakai in that afternoon for a blood test. I knew at that point they were concerned because it was already 4:00 and she wanted me to bring him in that day. His bilirubin was elevated so we were told to come back in the morning for a repeat test and an appointment. They did more extensive blood tests the next day and sent us to our local Children's Hospital in Indianapolis.

After a long couple days of testing, we were told that, more than likely, our baby boy had Biliary Atresia. Biliary Atresia, or BA, is a rare liver disease that affects newborns. Without surgery, children born with BA would not live past the age of 2. With the surgery, called the Kasai Procedure, 50% of patients would need a liver transplant before age 5.

Malakai had the Kasai on November 6, 2008. We were thrilled to take him home only 5 days after. He progressed slowly, but we started to see the whites of his eyes come back. By January, his numbers were coming down and we thought his Kasai had worked. He spent a few days in the hospital mid-January.

Mid-February we were told at his scheduled clinic appointment that he wasn't gaining weight like they wanted and they were going to admit him for a few days and insert an NG tube to feed him. They asked if we wanted to stay that Friday or wait until the following Monday. We decided to wait. But he had other plans. That night, he started acting very lethargic so we decided to take him to the ER. He had a very low sodium and they admitted him to the Pediatric Intensive Care unit. We had no idea that we were going to spend the next 4 weeks in the hospital. From there it was a constant battle to keep his levels stable. He had severe ascites, which was fluid on his belly. He looked 9 months pregnant. They drained his stomach multiple times but just couldn't get him stablized enough to send him home. It looked like we were heading down the road where transplant was our next stop.

The doctors had told us about Children's Hospital in St. Louis. Unlike the hospital we were at, Children's Hospital did all three types of liver transplant. Whole liver, split liver and living donor transplant. We were going to go to Cincinnati for their liver program, but Michelle Nadler, nurse practioner for the transplant program at St. Louis called and said they could transfer Malakai to their hospital the next day. It was a whirlwind, but on St. Patricks Day 2009, we were introduced to the wonderful liver transplant team in St. Louis.

The first person we met there was Penny Scholl, transplant coordinator at Children's Hospital St. Louis. She was, and still is, someone we trust with Malakai and love dearly. I feel like I can call her anytime and ask her anything to do with transplant. If she doesn't have an awnser, she will get one for me. And no question is too silly for her. She understands the uncertainty that we have, as liver parents. The second person we met was Michelle Nadler. She has an incredible memory and can remember things about Malakai and his journey that I do not even remember.

Malakai was listed for liver transplant on March 20, 2009. My mother in law, Cindy, began the testing to become a live donor for Malakai. His first call came on April 24. We did not have peace about that liver, and after much discussion, we decided to decline that liver. The second call came on May 1. We packed everything and head to St. Louis. He was prepared for surgery and we were given an approximate time of 8:30 pm for the start. At around 8 pm, surgeon Dr. Chris Anderson came in and told us it wasn't going to work. The liver they had for Malakai just wouldn't work in his little body. We went to a hotel that night, disappointed and unsure about the future. Would another liver come in time? Should we have taken the first liver? We were second guessing everything. Cindy's tests came back that she would not be able to donate to him. We felt like time was running out.

We went back to St. Louis on May 6th for a clinic appointment and decided because he needed Albumin for three days thru an IV that we were going to move out to St. Louis. We rented a furnished apartment and my in-laws drove out with our then 2 year old daugher, Makena. The doctors told us then, Malakai needs a new liver. And he needs it soon. Within 2 weeks. It was so scary to hear those words from a team of doctors we trusted with his life. My identical twin sister called that day and asked what blood type Malakai was. She was currently 9 months pregnant and found out at her doctors appointment that our blood type was O+. I was certain that my blood type was A+ and since Malakai was O, I didn't think I could dontate. I was then rushed into testing to see if I was an acceptable donor. We were sceduled for me to give a portion of my liver to Malakai on May 18.

We went to the Botantical Gardens that Mother's Day, May 10th. He was a tiny 7 month old baby with a NG tube in his nose and barely weighed 10 pounds. I remember thinking as I pushed his stroller that it was Mothers Day and a mother out there was spending their last Mothers Day with their child. I knew that in order for Malakai to live, we needed an organ donor. Most likely a child.

We decided on the morning of May 12 that we were going to take the kids to the zoo. I was on the internet searching for the hours when my phone rang. Anyone waiting for a transplant knows, that when your phone rings, your heart skips a beat. "Unknown" came up on my caller ID and I just knew it was it. I awnsered and Penny Scholl said "Third times a charm" I know I probably stumbled all over myself. This was it! We took a short nap and packed up to head to the hospital, a whole 5 minute drive. We arrived around 1 pm and he was sent back to the OR that night. He recieved his Gift of Life in the early morning hours of May 13. I can't even begin to describe the emotions I felt that night. My dad had a double lung transplant in August 2003 and never woke up. I expected the same would be true for Malakai. I was completely terrified that he was going to die. We slept in the waiting room of Children's Hospital St. Louis. Every few hours the nurses would call and give us an update. I feared the worst everytime they called. I read a lot on line about liver transplants and some fellow liver moms sent me pictures of their kids shortly after transplant. It helped but all I wanted was for them to say he was done and SEE him again.

What seemed like an eternity later, out walks Dr. Jeffrey Lowell. I think I held my breath until he said "He's OK" I wanted to hug him. We were able to see him shortly after 7 am on May 13. He was taken off the vent as we were walking into his room. He was doing so well. He is such a fighter, always has been. I have a feeling he always will be. Dr. Lowell said he was the skinniest (if that's a word) baby he had ever transplanted. You could literally count every rib on his chest.

He spent about 3 weeks at Childrens, another week in St. Louis and we were able to head back home. It was a journey I will never, ever forget. I'm so thankful to every doctor, nurse and friend we made while at Children's Hospital St. Louis. They treat Malakai like he is a part of the family, not like he's a patient. I'm not sure where we would be without the team at Children's.

I'm also forever grateful to our precious donor, Sherae. We pray for her family every night and hope they know how special they are to us. We could never repay them for the gift they gave to our family. Malakai was given a second chance because they chose to Donate Life.

Happy Birthday, Kaiden!

We celebrated Kaiden's first birthday at Chuck E Cheese and had a birthday party at our home yesterday. What a sweet boy he has become. I first called him my little curveball because he was not planned for, but now I cannot imagine my life without him. He started out with a head FULL of almost black hair and now his hair is light and almost blonde. He's crawling, pulling up on furniture and crusing around furniture with no desire to walk at all. I will stand him up and he sits right back down. Won't even try. That's ok with me though. He can stay a baby as long as he likes :) He's daddys little boy and sometimes I feel like he doesn't even like me. But I know he does, because when he cries he says MAMAMAMA....haha. I can't wait to see what God has in store for his life. He's a little bundle of energy and he goes, goes, goes. 2o12 is going to be a great year and I'm excited to watch all of our kiddos grow and thrive.

Tonight I took Makena to see Disney Princess on Ice. It was a "Girls Night Out" which she loves. She is always asking to spend one on one time with mommy. Who could say no to that?? Anyways, as we were going in we saw a homeless man sitting under a bridge with a cup and sign that read "homeless, anything will help, God bless" When we passed him, Makena said "Mom, that's weird!" I told her that it wasn't weird and that some people don't have homes or food to eat. On our way out, we gave him $2. He said "Thank you, young lady" She lit up. She was so excited to help him out. When she prayed before bed, she asked God to give him a warm place to sleep. I don't care if he truly needed the money. That was a huge lesson for her. I am so proud of the little lady she is becoming. I'm so blessed.

Hospitalization December 2011

It has been far too long since I updated this blog. I have been so thankful to have this blog to remember the good times, and the bad, throughout our journey. I want to start with our most recent hospitalization, then I’ll try to fill in with some of the details that I’ve missed out on posting about. Not just for those who may read, but for me in the future as well!
Thursday, December 15, Malakai had complained in the late afternoon that his belly hurt. I made dinner and he said he wasn’t hungry. I made him a plate anyway, and told him it was there when he was ready. We all ate and he laid down on the couch. He got up and said he was going to get sick so I told him to go to the bathroom but there was someone in there. He threw up on the floor and I cleaned it up and told him to go lay back down. He threw up again and I noticed it was pink. I asked him what he’d eaten and he replied “a poptart” which made sense. Then the third time, he threw up about 6 or 8 small blood clots. This is obviously not normal, so I immediately called St. Louis on call doctor who told me that if he threw up any more blood or developed a fever to bring him into the ER. Not 5 minutes later, he threw up what looked like pure blood. I rushed him up to the ER at Riley and we were admitted into the ICU. His labs looked good, but he showed positive for blood in his stool. We knew he was bleeding, we just didn’t know where. He was given Zofran and fluids and he started to act more normal. The docs from Riley were planning to do a scope but I told them I wanted them to contact St. Louis before they touched him. The GI didn’t like that. He rolled his eyes and walked out the door. It made me so mad because I felt like he was angry that I wanted our transplant hospital to be calling the shots. It’s nothing against the docs at Riley, but Malakais primary transplant docs are at SLCH and if he has ANY procedure at all, he has it done there. I don’t take Malakai to St Louis because it’s convenient or fun. I take him there because the team knows him best there and I feel like he’s in better care there. He didn’t like being there. It has certainly gotten more difficult for him the older he’s gotten. He kept saying he wanted to go home, he wanted to sleep in my bed, he wanted his sister, his dad, his brother. Anything to get outta the hospital. St Louis sent for the transport team and within a few hours of waking up the next morning, Friday (December 16) we were flown out to St. Louis. To top it all off, it was Makena’s 5th birthday. I was so sad that I didn’t get to wake up and make that day special for her. She had been counting down the days until her birthday for over a week and I missed being there for her. It really broke my heart. Thankfully, she was well taken care of by Daddy and my sisters.


We arrived in St. Louis and were admitted to their ICU. After an ultrasound, they determined that his portal vein had re-narrowed. He needed to have the venogram, or angioplasty re-done. He’d had the same procedure done in July 2011. Basically the vein from his liver to his bowel was narrowing and they just had to balloon it back open. Josh arrived out in St. Louis late Friday night. Malakai’s procedure was done on Saturday morning and did very well. He was a little nervous before. I think he thought they were going to cut his belly open. He knows they took out his old liver and replaced it with a new one, and that’s how he got his big scar. I convinced him he was going to be ok and they weren’t going to do another transplant but he was still pretty nervous. Thankfully they were able to give him meds to relax him and he didn’t even realize I wasn’t going with him. He had to stay the night Saturday night, mainly for observation. He then developed a fever shortly after the venogram and they decided to do blood cultures to make sure they hadn’t “stirred anything up” in his liver and caused an infection. He didn’t have anymore fevers after that so we were able to go home Monday afternoon. We go back in January for a repeat ultrasound to check and make sure his portal vein is still as open as it should be.

Then we all got a nasty stomach bug on Christmas Eve and woke up early in the morning vomiting and had severe diarrhea. Malakai, Makena and I all had it. It was awful. I ended up taking him to the ER for fluids around 3:00 on Christmas Eve. We missed our annual family get together for the second year in a row; last year I was on bed rest. After fluids and IV Zofran, we were sent home around 7 pm and able to spend Christmas at home together.
I will post again soon about our Make A Wish trip to Disney. It was an incredible experience that I will never forget. We had so much fun and it was literally a trip of a lifetime.

A few pics from our hospital stay....

Malakai on the stretcher being transported from Riley to St. Louis Childrens Hospital. He was excited to ride in a plane and even got his own pilot wings :)

Sleeping peacefully (as peaceful as you can in the hospital!)Malakai with our one of our most favorite nurses, Michelle Nadler. She is AWESOME!!

Playing with the train table in the Child Life playroom

Malakai and Daddy with Miss Penny (Scholl) She's pretty awesome, too.

Malakai with one a great nurse, Erika. We were lucky to have her two days in a row :)

More pictures!

I can't believe its been over a year!!

I am almost ashamed it's been so long since I've blogged! We moved to our new house and we didn't have internet here until about a month ago. Which really isn't an excuse, but it's my excuse :) I only used my phone for the internet and couldn't update blogspot on my phone.

Anyways, we welcomed our newest member into our family on January 18th (the day after my birthday....I really thought we'd share a birthday, but he waited a few hours to have his own!!!) Kaiden Zion Cruse was born January 18th 2011 weighing 8 pounds 4 ounces and 20 inches long. We didn't have a name for our poor baby boy until we were literally leaving the hospital. We just could not agree! He's been an absolutly wonderful addition and I can't imagine our life without him. He's been the best baby. He just recently started to really crawl. For the last few months he's been army crawling to get around. He's a sweet boy and I could go on and on about him :)

First picture of me as a mommy of 3...I remember thinking "wow, I can't believe it. I have 3 kids!"

Long overdue update!

Some recent pictures!!!

I don't even know the last time I updated, but I know it's been too long! We found out we are having another little boy! He still doesn't have a name, but we have 12 weeks left in the pregnancy to come up with one. Makena was very disappointed that he was a boy. She really wanted a sister. I told her I would be coming home with balloons and if they were pink, she was having a sister..if they were blue, it was another brother. She came running around the corner when she heard the door open and the look on her face was pure devastation. Poor thing, she really was upset. Shes gotten used to the idea now, and even acts excited. But still asks when she is going to have a sister...

Malakai is doing WONDERFUL!!! He is now completely out of all therapy. No more physical therapy, occupational or nutritional therapy. He's well on his way to being a normal little boy!! He's talking up a storm and developing his own personality. He's just recently learned to climb out of his crib, and thankfully has only done it once. But he's fighting naptime, and hasn't napped in over a week! He is starting to make himself throw up to get out of bed, something I never dealt with, with Makena. We have started to potty train and he's actually doing well. At first, he had no interest in it at all. But the last few days he's shown alot of interest and I am hoping he's trained, at least for the most part, by the time his brother gets here!

We had a big birthday party for him! Bouncy House, real cupcakes (with his dairy and egg allergy, he never gets treats like that!) plenty of Mickey Mouse and lots and lots of fun! He had a blast and we had a great turnout! He was saying "Thanks for comin'!" as people were leaving, so so cute!!

We go to St. Louis in a few weeks for his check up clinic visit. We havent been since May and really it's just for an ultrasound to check is portal and hepatic vein (where he had the narrowing) I'm excited for all of them to see him, he's really changed so much since then!

We recieved a letter from our donors family this week. It was such an emotional letter, awnsering a lot of the questions I have had since his transplant. They sent us pictures and she was such a beauiful, vibrant girl. I mourned for her family. They lost a very important member of their family. I've always known it, it just made it seem more real I guess. I hope to eventually build a relationship with them and maybe one day get to meet them. I'd love for them to be able to meet the little boy who's life they saved. They are forever in my heart and I love them.

Another hospital stay....

Malakai started developing fevers and becoming irritable a few weeks ago. I took him to the doctor who diagnosed him with an ear infection and started him on an antibiotic (Augmentin) After 8 doses, he seemed to be getting worse, not better. He basically stopped eating and would not let me put him down. He was in my arms, in the rocking chair, all day for four days. By Sunday, I thought he was looking pale and he was almost lethargic. After calling St. Louis and speaking to the doctor on call, he advised we take him to the ER to get him checked out. After three days at Riley, blood, stool and urine cultures all coming back negative, they were getting ready to send us home. Then he had a stool test positive for blood. After that, they set up an ultrasound and called St. Louis to figure out what they wanted to do. The ultrasound revealed that his portal vein (the vein going out of his liver) was narrowed. He had a narrow hepatic vein in January. The docs said for both of the veins to be narrowed post-transplant is rare. So we were flown to St. Louis on Wednesday evening and he was scheduled for his procedure Fridaymorning. They went in and ballooned his vein to open it back up. Because of his size, they didn't put a stent because he has alot of growing to do. Because of his multiple ear infections, and his body taking extra long to fight them, they went ahead and put tubes in his ears at the same time. I was thankful they were able to do both procedures at the same time with one anesthesia. He went back to eating and drinking normally after the procedure and was discharged Saturday morning. We were so glad to be home, and I think Makena was equally glad we were home! Poor girl, she's really starting to understand more when I'm gone. It was difficult this time being in the hospital, being pregnant and all. I slept in the bed with Malakai, and he wanted to be touching me at all times. Doesnt make for a very restful sleep. I'd do it all over again if I had to (praying we don't for a very, very long time) I'm just thankful he's here and is able to live a normal life :)