Hospital Update

My next post is going to be full of pictures. I had so many pics I wanted to share, but this update is coming from the hospital and I am on Alex's computer!

Let me back up to where I left off. Mimi and PopPop left on Saturday the 8th. It is always hard to say goodbye. The kids loved their time playing with Mimi, especially Maddy who wouldn't leave Mimi alone for a minute.

On Sunday, the 9th we were privileged to attend a Texas Rangers Game in a Suite thanks to Cook Children's. It was such a fun time for all of us. Alex brought his best friend and Maddy loved on Ralphie the whole game!

On the 10th, Maddy had her cast removed. When they repeated her x-ray they found she actually had 4 fractures! Poor girl. No wonder she was in pain. We left orthopedics and headed to the Golf Club to meet up with our "family" from the Cook Children's Health Foundation and speak about what Cook's and Children's Miracle Network means to us.

On Tuesday, Alex had an appointment with his endocrinologist who adjusted his medication in hopes of helping with how fatigued and cruddy he has been feeling.

Wednesday, the 12th, Grandpa flew in!We actually enjoyed a few days of just regular activities before the craziness started again!

Thursday we had to do another X-ray as Alex continues to struggle with GI pain and nausea. It looked worse then his baseline terrible X-rays and it was decided that we needed to see our GI the next morning. Friday we say Dr. O and he said his pain and nausea is definitely a flare-up of his chronic intestinal pseudo-obstruction. He talked about how significant Alex's GI dysfunction is and us not having a whole lot of options to improve it.

Alex has been participating in an acting and improv class since January. He has really enjoyed it and the Spring Recital was last week. Alex had a dress rehearsal Thursday night and performances scheduled for Friday night and Saturday afternoon. I was able to attend Friday's performance and was so incredibly proud of Alex. He did a great job and really enjoyed himself. He was really struggling with anxiety regarding his performance and I was so proud of him overcoming that anxiety and pushing himself to perform. His kind spirit came through as well. The center where his acting has taken place has a neat tradition of offering flowers that can be purchased during intermission. Yu write a note and the flowers are delivered to the performers at the end of intermission. Alex received three flowers (2 from me and 1 from a classmate). He noticed that one of his classmates didn't receive any. He quickly ripped a note off one of his flowers, stuck it in his pocket and presented it to her. She wouldn't accept it, but I told him that gesture means more to me then any acting performance or play. It is these little moments when I see his kindness, his love, his heart that make me so thankful I get to be his mom.

We were both heartbroken when he woke up Saturday morning with a fever. Bruce, Alex and Maddy were all supposed to attend the performance with me. Alex was so worried about letting his classmates down. When he called me up his fever was 100.9 and I was hopeful maybe he had just overdone it with two late nights in a row. Unfortunately within 30 minutes it had climbed over 102 and before we left the house was up to 103.8. By the time we were getting in the car I knew it was not good because he had really bad chills and was complaining of having visual disturbances. We got to Cook's ER and were immediately taken back. They couldn't even get an initial blood pressure because his chills were so extreme he was moving too much for the machine to register a bp. They called a sepsis alert and we had about 12 doctors, nurses, paramedics and respiratory therapists in our room. They jumped in to action and worked feverishly to stabilize Alex as he decompensated. He looked pretty scary for a bit, but we were able to get him to a point where they felt it was safe to send him to the floor and not the PICU. Before the end of Saturday we knew he had a line infection. He was still feeling really bad and some of his labs did not look good.

Yesterday we woke up to the scary news that he was growing the same bacteria that we nearly lost him to in 2010. Klebsiella Oxytoca is a bacteria that translocates from Alex's GI tract into his blood stream causing scary infections and sepsis. In 2010, he went into DIC (bleeding/clotting disorder), kidney and liver failure and was intubated on a ventilator. Luckily, this time we were able to treat quickly and he did not wind up quite as sick. It was still scary for my Mom heart knowing how serious this infection could be. He did ok yesterday, but he continued to have low blood pressures and was not creating urine like he should. He was also extremely pale and puffy. They ordered labs to be repeated this morning and luckily overall his labs are trending in the right direction. He looks and feels better today. The only negative today is his blood work showed his pancreas is flared again. However, he appears to be out of the woods. The doctors are hopeful that we can go home on IV antibiotics in a few days.

Those of you who know us know that we love our church and our church family. Our praise Band has been playing a song that has really spoken to me over the past few months. I want to leave you with the lyrics and the hope that Alex and I always use "our story" in a way that gives back and honors God.

"Life is short; I wanna live it well

One life, one story to tell
Life is short; I wanna live it well
And you're the one I'm living for
Awaken all my soul
Every breath that you take is a miracle
Life is short; I wanna live it well, yeah

I got one life and one love
I got one voice, but maybe that's enough
'Cause with one heartbeat and two hands to give
I got one shot and one life to live"

Thank you for all your prayers and thoughts.

Ali