Wednesday, September 25, 2013


I feel I am taking back years in time tonight, to the time when we truly never knew when Jacob would land in the hospital. If somebody would have told me this morning that Jacob would sleep in the PICU tonight, I would have said "no way". But that is where he is once again tonight.

He had his follow-up appointment from last week's hospital stay with Dr. E. this afternoon. I had noticed his heart rate was elevated and his work of breathing was a bit more today, but nothing alarming. I was blaming myself for not having given Jacob a dose of Tylenol before leaving home, since that decreases his heart rate. Instead I walk in to the Clinic with a child with a temperature of 101.1. I know that Dr. E. never ever takes a fever lightly in our boy. For her, fever is equal with an infection.

Suddenly everything happened at the same time. Jacob's diarrhea was out of control, secretions were non stop, his myoclonus was acting up. After suctioning, Jacob choked on his secretions, stopped breathing, and most likely aspirated IN FRONT OF DR. E! I am sure she has seen it all, but she is not comfortable with an emergency situation in her clinic. She wants it in the Emergency Room where there are resources. As I was sitting Jacob up, she grabbed for the suctioning, and we were able to stabilize him. After an episode like that, Jacob sounds if possible even worse. I know the only thing that will make his saturations go up is a good deep suctioning. Dr. E. didn't want to have any more suctioning happening in her clinic, and we got sent over to x-ray together with the respiratory therapist manager, and an oxygen tank with 3 liters of oxygen. He handed us over to another respiratory therapist, who knows Jacob very well. He was in agreement we had to deep suction right there in the waiting room of radiology. During suctioning, Jacob's oxygen dipped down to the 70s, and he required 6 liters of oxygen. Dr. E. called us to go straight to the ED after the x-ray. The snowball was going downhill.

We were greeted by a whole crew in the trauma unit. Dr. E. had rushed over to the ED with our red wagon we had left in the clinic. She knows my diet coke is close to my heart, so she grabbed my half full can and put it in the wagon, little did she know that it is an art to steer our wagon. We had a red wagon full of diet coke when she arrived :- Jacob got stable in the ED, but the snowball continued downhill. Everyone was pointing to his chest x-ray saying how "fluffy" the whole x-ray looked, and shortly IV antibiotics and fluids had been started. I just saw us being in for a very long hospital stay. Pneumonia had gotten worse....IV antibiotics on board....fever back....desating with suctioning....the snowball was still coming downhill.

So, tonight we ended our day in the PICU once again. It is the best place for Jacob to be when he is acutely ill. We have the same team as last week, so we definitely feel continuity in care. The PICU team doesn't agree with the ED's assessment of his x-ray. They don't think it looks any worse than last week, so they stopped antibiotics after one dose. They are testing him for respiratory viruses once again, since Jacob could have caught something last week in the hospital...I am sincerely hoping for a quiet night in the PICU, and that we tomorrow can get a better sense of what is going on with our boy. It just makes me so sad to see him this sick again. Early fall is typically our prime time. Jacob can go to school. Jacob can be outside with the cooler temperatures. We get to enjoy family time together before winter arrives.

Keep Jacob in your thoughts and prayers tonight.

Love, Maria.


  1. I am thinking of all of you and hoping and praying for the best. Please take comfort in knowing that you have so many sending positive thoughts your way!

  2. Replies
    1. Linda, thank you so much! You are never far from my thoughts either.