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 :)

Long overdue update

We have yet to get internet out at our new house and therefore I am never on an actual computer. I came into the office today to work so I decided while I had a few minutes, I would update this blog. I've been a terrible blogger post transplant. But I guess it's good that he's doing so well that I don't have much to update :) He's a walking, talking toddler. He's weaned from breastfeeding (Hooray!!) He loves to mimic his sister and he's finally been trying new foods and drinks! His labs were stable last month, praise God. He's sleeping through the night, although he's an early riser (Usually around 7:15) He's getting stronger in his physical therapy. You should see him try to jump. It's hysterical. It looks like he has a peg leg. His core muscles are what needs work but I think in a few months he will be caught up to his age. We've taken his Occupational thearpy down to only once a month...he's doing so well. He's also going to be a BIG BROTHER. Yes, I am indeed pregnant. Almost 10 weeks to be exact. This was not a planned pregnancy in the least. Malakai is still so needy and with his health being fragile, we were not expecting to have another baby at least until he was 3 or 4. But God has other plans :) We are due January 24th. Not only am I expecting, Josh's sister is pregnant with a little girl due in September and his brothers girlfriend is expecting a baby in December. Josh's cousins wife, we are close to just found out they are expecting as well. Four new babies in the Cruse family!! Makena really wants a baby sister and says if it's a boy, she will be sad. I'm trying to prepare her in case it is a boy. She understands but I think will still be disappointed if it's another brother. She will tell complete strangers "My mommy has a baby in her belly...but we don't know what it is. Only God knows. He gets to choose!" It's very sweet how interested she is in the pregnancy. She wants me to read her the pregnancy books and asks 1000 questions. Her mind is much different than when I was expecting Malakai. We're stuck with baby names, trying to decide if we stay with the "M" or move onto something new. We have plenty of time, I suppose :)

I am thinking of writing our donor family again. I sent the first letter in March and haven't heard back. I think about their angel often and what she has done for our family. She gave us our son back. I ran across this picture on my computer and it makes me want to cry. He was so thin and so, so sick. Here he was just weeks before his transplant. 7 months old and probably only 10 pounds.
And here is at Emma and Jack's birthday party riding a big kid bike. He really wants to be big :)

Messy after breakfast...complete with a baby food unibrow!

Here is my little guy at the zoos splash park. He loved being able to run around with all the other kiddos...I loved watching him. And check out that belly...doesn't he look great?!!!

Happy Liver Day!!

We celebrated one year with Malakai's new liver on Wednesday! The day was beautiful. I reflected alot on the past year and just how thankful I am for his donor angel and her family. Without a new liver, he wouldn't be here and I am forever grateful to them. My baby has endured alot of hardships over the last 18 months but I am so, so thankful for him to enjoy life and to be healthy.

We went to dinner with our immediate family...Rita, Brent, Clay, Addie (Happy 1st Birthday, girlie girl :) Sarah, Emma, Jack, Grammy, Billy, Nana, Papa and Uncle Jeremiah. I brought along butterfly cupcakes...the butterfly is the symbol for organ donation.

We went on vacation last week to Orange Beach, Alabama. I will be posting pictures as soon as I can find my camera cord. We had a blast! They both did well on the flights and behaved very well. Both kids enjoyed the beach and the pool. We had a little scare while we were down there. I had to take Malakai to the ER in Pensacola to have his blood drawn. He had a bloody stool, and with his internal bleeding in March we had to be extra cautious. Everything checked out OK and we enjoyed the rest of our time. But man, it was scary!