Alex and Maddy

Alex and Maddy

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

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