Friday, November 14, 2014


It is a good thing, but I had forgotten how busy it is when you have a sick child in the PICU! All day we have had members of the PICU team, Jacob's specialty doctors and nurses running in and out of his room. I can't believe it is dinner time already.

Jacob had a rough night. They knew they needed more access than Jacob's medi-port for all his medications and IV fluids. They were able to get an IV line, but fairly quickly it got infiltrated. Jacob's arm is today swollen and bruised. In the end, they were able to get a central line in his neck.

Jacob's blood pressures continued to be low overnight, and he was started on blood pressure medication yesterday. As it continued to dip, they wanted an arterial line so they could get blood pressure readings at all times. I am so happy I wasn't here because our boy was poked for over an hour with no arterial line as a result. They simply had to give up...Today, they have looked again with ultrasound for a possible arterial line, but for now they are holding off.

Sepsis is confirmed, but we still don't know what is the source of his sepsis. We know it is not respiratory. The big question is if it is GI related. We know Jacob's tummy can do all kinds of things to him. He doesn't have signs of colitis at this time. GI is taking another x-ray tonight to get a better look at his gut.

All day, Jacob has been very sleepy and lethargic. He is on heavy duty antibiotics, and he is needing Benadryl every 6 hours due to an allergy to one of his antibiotics. Benadryl is not helping Jacob to stay awake. Jacob is finally holding his temperature a little bit better. His blood pressures continue to be on the low side, but for now he is stable with medication. He is actually quite awake right now, and watching cartoons on his IPad.

The team tells us we need to give Jacob time to heal. So for now we have moved in to the PICU once again.

For a while I have wanted to post this beautiful letter from nurse Gemma to Jacob. I thought you might enjoy it as you're thinking about our boy in the PICU tonight.

My Handsome Jacob,
I don't even know where to start. February 2010 will forever mark the time you stole my heart. I had no idea how I was going to take care of you, but I knew I needed to figure it out. My first days with you, I cleaned poop off the carpet, ran up the stairs for oxygen because you turned blue (I was suctioning you downstairs without it), gave you your meds in your feeding bag, called your mom because you were crying, and repeatedly asked your dad if your movements were normal. Somehow Jacob, we figured it out. At some point we fell into synch. I understood you, just as much as you understood me.

Jacob, you have not only made me the nurse I am today, you have helped to shape me as a person. I never really knew what it was for someone to need another until I met you. Somehow I felt like I was supposed to be with you. I first thought it was because you needed me medically. Truth is, I needed you to help me finish "growing up". I learned what it was to care for someone unselfishly. I learned what it was to love someone whole heartedly. I learned how to appreciate every day we are given.

I can honestly say that in my entire life, I have never met someone as strong as you. Immediately, I knew you were a fighter. You are by far the definition of bravery. Despite what you have been through, you have a passion for life, and an incredible love for others. I have watched you claim the hearts of people around you time and time again. Your pure spirit and your big heart are so hard to resist.

Taking you to school has always been the highlight for me. Answering questions like "Are his legs broken?", "How does he eat?", or "What happened to him?" has always been interesting. I have enjoyed watching your classmates help you color, make choices, read, or even just play. You've been a dinosaur, a camper, a doctor, and most importantly...a friend. I've loved watching kids light up with excitement when they see you walk through the door. You have taught these kids rue compassion, and the ability to see past a disability. If everyone had a Jacob in their classroom the world would be a better place.

Jacob, I can't thank you enough for letting me be a part of your life. I am not saying good-bye. I am simply moving aside to let you teach someone else what you have taught me. I am going to miss you bossing me around, your little scrunchy-faced smile, and talking to you. I guess it means I'm going to have to come back often. I want Derek to grow up knowing my Jacob. So Jacob, I hope it's ok with you, but I will visit and check in often. I am never far away.

So, Jacob be good to your nurses. Try to say please even when you're being bossy, and don't forget to tell mommy and daddy you love them once in a while.

Always on Team Jacob,



  1. The most beautiful letter I have ever read. Makes me cry with joy!

    1. Thank you, Jac. Miss you & your beautiful family! Love, Maria.

  2. You all remain in my prayers! Love Linda

    1. Thanks Linda! You are always supporting us. Love, Maria.