Tuesday, November 18, 2014


We're on day 6 in the PICU, and it has been a long six days. When we got here on Thursday, the PICU was deserted. Now it is almost full. That means we get to witness many sick kids. I also don't know how many room neighbors Jacob has had in the last week. We're the ones staying put, the other kids are moving out of the ICU.

After six days, we have had too little sleep, too much junk food, too little time at home, but very few answers to what is truly is going on with Jacob.

We were told Jacob had sepsis on Thursday. Many thought he had had a stroke, I found out later. Nothing has grown out of the cultures, so there is no source for the sepsis. Did Jacob experience an adrenaline shock, since the symptoms are very similar? Low blood pressures, low body temperature, and lethargy.

No matter what is going on, Jacob's body has been under extreme stress in the last week. Since Jacob's adrenal glands don't work, Jacob needs to be stress dosed. This means high doses of IV steroids. Endocrinology is following Jacob closely, and we will go home on a new steroid plan with a slow wean plan to make sure Jacob doesn't end right back here again. We're also going home with a glucose meter, so we can check his glucose if he shows signs of being lethargic. We're getting trained to poke our little guy tomorrow morning.

And then there is that enlarged right pupil that worries everyone despite an unchanged CT scan of Jacob's brain. Everyone is waiting for Dr. C to come and give her view on Jacob's lethargy and pupil. The question everyone dances around is if Jacob's mental status has changed? There are definitely times throughout the day when Jacob is lethargic or simply wants to sleep. Jacob is not completely himself.

Despite everything going on, I do think we should try to get our boy home as soon as we can and the PICU team agrees. They want to move him to oral steroids tomorrow and see how Jacob responds to that. Endocrine has a suspicion he is not absorbing all his steroids, since he is requiring higher doses than his body weight should need. They want to see how he does tomorrow, all toes and fingers crossed, maybe home on Thursday? After two weekends in the PICU, that sounds like music to my ears.

For now, Jacob and I are cuddled up in bed watching The Voice.. We're hoping for a good night nurse who will let us sleep a little tonight...

Thanks again for all the visits, messages, food and gifts. We never ever feel alone.

Love, Maria.


  1. We are thinking of you all and hoping and praying for enlightenment that leads to the best possible treatment for Jacob!

    1. Thank you, Ronda! Jacob misses school and his friends.

  2. Praying for Jacob and the rest of the family always,lots of hugs, I really pray he gets to go home soon. .. oxoxox

    1. Thank you, Olivia so much. I hope you're doing ok!