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.
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 :)