Friday, November 16, 2012


It's Friday evening in the PICU. We're embarking on another weekend in here. If everything goes according to plan, we are going up to the floor on Monday. Jacob is definitely stable and more alert as he is now receiving adequate fluids and nutrition.

The good news is that we don't see any seizures. We're continuing with epi-743, and on Wednesday Jacob will have an EEG to see if his subclinical seizures have changed. I am a both nervous and excited to see the results from that.

This tummy monster that has taken over Jacob's life is no fun! For the first time since Jacob was an infant we're dealing with GI. It is never a clear plan, but more of a "trial and error" approach. I guess you could say that is how neurology works too, but we just have such a strong decision-maker of neurologist on our team, so I never feel that I am lacking a plan with her. The head of the PICU confirmed my frustration. This is often how it is to work with GI. There are so many reasons why you could have diarrhea, and each patient might respond differently. After further tests, GI is now not sure if we're dealing with a viral or chronic colitis or Inflammatory Bowel Disease. They are all on the table!

I never thought that the first question I would have in the morning is what the stool output has been over night or where we are with stool output throughout the day. My first thought in the morning is hoping for less poop! It has become an obsession of mine...So, I am glad to report that we have had LESS stool in the last 2 days! It could be a happy blip, so his stool output continues to be monitored around the clock. We're hoping that it means that the anti inflammatory drugs and antibiotics are working.

Jacob is today receiving all his nutrition via IV. We were told today that his stool needs to decrease 2/3 from where he is today for us to consider feeds again, so we have still an upward battle with the tummy monster!

We had a care conference this afternoon to discuss plan for Jacob, and how we can safely transition him from the PICU to the floor after he crashed on the floor last week. I am amazed with the medical team Jacob has. It was a great meeting, and I feel really good that we have the weekend in the PICU, and then if everything looks stable, he will be moved up to the floor on Monday. We're doing some changes to his stool replacement this weekend that should help his care on the floor to not be as intense as it is now. Jacob is one lucky boy to have Dr. E. & Dr C. They are such strong supporters of him, and they always set the tone for his care.

Tonight, Jacob and I are watching a Charlie Brown Thanksgiving in bed. Tomorrow, sis will come and visit with Jacob. In the middle of no clear answer of how much longer we will be here, I am tonight going to celebrate the progress we have seen over the last two days.

Have a great weekend everyone! Thanks for everyone's continuous support, food, goodies, messages & visits! We can't thank you all enough.

Much love,


  1. Hooray for a good day!! Hoping the weekend brings "less poop" and more smiles from Jacob!! Hugs!! Linda

    1. Me too! Happy Thanksgiving to you all! Love, Maria.

  2. Maria, I am so glad to discover your family! I am sending happy thoughts and good wishes your way. Jacob's story is very inspiring and hoping that everything goes well!

    1. Eleanor, nice to meet you too! I am hoping the same for you and your family!