Alex and Maddy

Alex and Maddy

Friday, April 28, 2017

Setbacks

Yesterday was definitely a day of ups and downs. Alex woke up feeling a bit better and was a lot less anxious. Unfortunately those positive vibes didn't last too long. Alex started to feel pretty cruddy again and by 7:30 his temp was up over 102. With the fever also came some anxiety about knowing that another surgery is upcoming in the near future.

The morning also brought with it more testing. We went down stairs for both an ultrasound of his liver, kidneys, spleen, and stomach. Then they took us over to echo to look at his heart. Once again child life came through in a huge way. They shuttled Maddy off to the playroom so I could go with Alex and Maddy would not be bored sitting in tests.

We got settled back in the room and waited for Mimi! Mom got here shortly before 3. Alex and I were both so excited to see her. Maddy was still napping, but we let Mimi wake her up. Maddy quickly shuttled Mimi downstairs for a medical play activity.

I was a little surprised when I got a knock on the door around 3:30 and a second visit of the day from our hospitalist. We stepped into the hall. (Alex who has always been an incredible advocate for himself, has asked that I not speak to the dr's in the room because it is "freaking him out"). Dr. H let me know that they had some results from the earlier tests. Thankfully his abdomen looked good. They did not see anything that looked questionable. It was also good in that they feel like they got enough images to say that. Alex's GI system is FULL of gas which makes it nearly impossible to see anything on ultrasound. Unfortunately the news on the echo was not as positive. They see what "may" be a pocket of yeast at the opening of the heart. They tried to go back to old echo's and see if they could confirm if it is something new or just part of Alex. They were not able to see an exact image where they felt like they can rule it out. The plan right now is that we will repeat the echo on Monday to see if they still see it. If they do, he will be sedated and they will do a transesophogeal echo. The treatment would be the same, but if he has endocarditis we would treat much longer. I was caught off guard. I will hopefully be able to ask more questions today.

Our GI also came by yesterday. We all wish there was more we could do to help his GI system so we wouldn't wind up in situations like this. We just don't have a whole lot of options at this point.

Our last visit of the day was from the ophthalmologist to look for yeast in Alex's eyes. He did not see anything concerning. This sweet man was about to leave and asked if it would be ok to pray with us. He was so kind and caring and we will gratefully pray with anyone!

Alex did spike another temp last night, but his vital signs looked much better then with previous fevers.

I had what I thought was allergies. But as the day went on I felt worse and worse. Weeks like this are brutal on a Mama's heart and I think my body is calling uncle! I have a nice little cold and no voice at this point. But I did take nyquil last night, so at least I slept.

A special thanks to my Mom who dropped everything to be here to help. I am so lucky to have been raised by a woman who continues to love completely selflessly no matter how old I am.

We are feeling so incredibly grateful for all the support. We feel the love and prayers. I wish I could recognize all of the people who have stepped up to help in so many different ways. We are so blessed by all of you!

Ali

Thursday, April 27, 2017

Scary Day

Monday night it appeared as if we were going to be discharged home on Wednesday to continue IV antibiotics for 2 weeks. When the infectious disease doctor logged on Tuesday morning to start working on home health orders she realized the culture from Saturday night was growing yeast. (In the world of central lines, yeast is the scariest/worst thing to be growing) By the time she made it up here Tuesday afternoon, Sunday's culture was also growing yeast and by night so was Monday's! The ID doc started a strong anti-fungal and we were still hoping to try and treat without having to remove his port. We were all aware that the reality was it would most likely need to come out.

Yesterday morning Alex woke up and immediately told me he wasn't feeling great. Shortly, after we checked vitals and his temp was over 104. With him declining and knowing how sick yeast can you they decided the port had come out...and pretty imminently. The hospitalist left to call a couple of other dr's and order labs and before she made it back in the room, surgery was already here to assess him. Alex was feeling bad and extremely scared. It is heartbreaking when your child knows that central line infections can kill them. When they have lost friends. The fear is real and it is brutal. Alex told me he over and over that he didn't want to die, that he wanted to get married and have kids and retire. He was worried about who would look after Maddy if he was gone. My Mama's heart was battling its own fear and breaking for my precious boy who has to carry so much in his head and heart. So many scars that will always be there. Poor Maddy was also scared and knew she was being shuttled off to someone. I tried frantically to reach out to a few "friends" in child life who I knew that Maddy would be comfortable with and tried to comfort both my babies.

I need to pause for a moment to acknowledge how incredible this hospital is and why we love it so much! The staff here has been incredible about Maddy staying with me and she has surely entertained the 4th floor. Yesterday in the frantic rush of getting Alex ready, Terri, the child life specialist for the floor came and grabbed Maddy so I could focus on Alex. She then arranged for volunteers to be with Maddy ALL day so my attention was where it needed to be. She went to drumming circle, played in the playroom, watched a movie, did stickers, and loved on miniature horses. They fed her lunch after checking with me to see what she could have. It was truly family centered care at its best. They realize it is not only the patient who is affected. They knew what was necessary and they made it happen so I could care for Alex without having to worry about Maddy. And she had a blast! Not to mention how awesome it is to have doctors who realize the role the parents play and are willing to DISCUSS treatment and not just dictate orders.

When we got down to OR holding Alex was still really nervous.  So our beloved Kizzy and Ralphie (after making a quick detour to check on Maddy) came and hung out...as in Ralph got in the bed and cuddled. Not quite as good as Zoey or Mia, but a close second. The surgery seemed like it took longer then I thought it should, but I think a lot of it was the holding. We left his room around 11 and got back around 4!

Shortly after getting back to the room he started to decline again. He fever was back up around 104, his HR was extremely high, his blood pressures were low, her perfusion was bad. Overall, he just looked BAD. Similar to the ER on Saturday. The doctor and I made the decision to give him a huge dose of steroids since his body can't make cortisol. (He was already on IV steroids, but this was in addition) She also gave him a fluid bolus.

Infectious disease followed her in and she let me know what to expect over the next few days. Today he will have an echo of his heart, ultrasound of his liver, kidneys, spleen and stomach, and at some point an ophthalmologist will assess his eyes. They are looking to be sure there is no yeast anywhere. Yeast likes to attach to organs and hide. We need to be sure it was "only" on his line!

Because Alex was still not looking good they called the doctor back. They had switched to the night time on call hospitalist and I was really happy when my favorite hospitalist walked in. There is a trust there and we communicate/collaborate really well to make sure Alex is getting the best care. He did not like the way Alex looked and quickly ordered another fluid bolus. I mentioned that when Alex is anemic he runs really high HR's so we may give him some blood today depending on what his CBC this morning looks like. After that bolus, he started to look a little better so he ordered one more fluid bolus. Somewhere between the 2nd and 3rd bolus his fever broke. His HR is still pretty high, but not scary like yesterday.

This morning he is up and talking to me and feeling a little better. We will be inpatient for a minimum of another week. We need to be sure we clear this infection before we can place another port.

I am so very grateful for our village! The prayers, the support, the love we have felt has kept us going this past few days. THANK YOU!

I am so HAPPY that Mimi is flying in today to be here for me, her boy and to help with Maddy.
I know she can't wait to hug her best boy.

I am doing my best to weed through messages, respond and keep everyone updated, but please be patient with me as my focus is on my babies and making sure they are both cared for.

Ali

Monday, April 24, 2017

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