Sunday, October 20, 2013


The one thing I have always tried to find in my writing is honesty. I will share both the good and the bad. I am generally a positive person, but this week was tough. Jacob started to not be himself a week ago with a long seizure coming out of the blue. Each day, he showed more and more symptoms of not feeling well, and Friday it all escalated and I felt I was completely out of control. Jacob's brain might be bleeding, meningitis needed to be ruled out, intubation was on the table, GI was aggressively thinking about scoping him once again. I knew I had a very sick boy, and somewhere deep inside I was not sure if Jacob was going to pull through.

I am very delighted to say Jacob is doing much better today. Jacob's labs show sign of a viral infection. That would explain him getting sicker each day. What also happened is that his seizure medication Phenobarbital didn't get metabolized in his liver very well. It was at a record high on Wednesday, and still very high on Friday when we got in. This would explain Jacob being so extremely lethargic. He just couldn't stay awake with so high doses in his blood. The only way they can explain this is that his liver was working extra hard fighting this infection, and therefore couldn't also spit out his seizure medication. His level of Phenobarbital is back to normal today, and he looks overall pretty good actually. As the attending said, any other kid she would have sent up to the floor today, but Jacob is Jacob, and she wants him on close observation at least one more night and day.

We are also not so sure his colitis is flaring up any longer. He does have diarrhea, but he is also on IV antibiotics. Right now, we're not sure if the diarrhea is due to him being on antibiotics or colitis. No scoping of his colon today, and if he continues to do well, we will see GI outpatient next time.

This life with Jacob is a little bit on the crazy side, but I am so thankful for our fighter boy and him doing so much better this afternoon. Right now, he is watching a teenage TV show with his sister in bed:

Jacob got to sit up today, and enjoy our mountain view:

Jacob got to enjoy the ICU Spa this morning:

Sunset from our room last night:

We are hoping we can take our boy home soon again!

Love, Maria.


  1. Maria I admire you in so many ways, as I have followed Jacob's ups and downs these post four weeks I have been in tears feeding the worst, my heart hurt for you and your family with the not knowing.I'm so glad my buddy is doing better.I'm do glad to hear this.please hug him for me and I am sending you and your family hugs and lots of prayers as well.Thank you for keeping us up to date.oxox Olivia

  2. Thank you so much, Olivia! I hope you are starting to feel better too. You are quite the fighter yourself. Love, Maria.