Saturday, June 4, 2011


Yesterday Jacob reminded us all how quickly he can get sick. We had follow-up appointments with Dr. E. and Dr. C. Gemma was going to come along for the appointments, and she took his temperature right before we jumped in the car. The verdict was 98.2. I was talking to one of my Mito moms in the car, getting an update on her little man, and had absolutely no worry about Jacob getting sick.

As we got checked in to see Dr. E., Jacob had a low grade fever. We all explained the fever with the heat outside. Jacob still adjusting to the fact that summer is here. They retook it 10 minutes later, and it had bumped up to a true fever.

The first thing Dr. E. said when she walked in the room is that she didn't like his vitals, and that she had said a word that starts with an 's' and ends with 'hit'. She was not happy!

Due to the fever, she wanted to order a chest x-ray and blood work to rule out another pneumonia or line infection, since he has been using his medi-port a lot lately.

She knows that we're doing a fundraiser for Miracles for Mito at my house this weekend, so she was extra sorry that Jacob was getting sick, but she already knew she had to admit him with the high fever, him very recently being sick with pneumonia, and his skin color.

Things got busy in Special Care. Medications were given for his fever, labs were drawn, Jacob started seizing, more meds were given, Dr. C. came with a new seizure action plan "hot off the presses", and the fever continued to spike. We also got a pediatric bi-pap mask for Jacob despite it not yet being approved by FDA! They only received 3 masks from Australia on Thursday, and Jacob was one of the few lucky ones. The things that can get you excited!

Dr. E had to run up for a meeting in the middle of all of this, but put one of the other doctors in charge to keep an eye on Jacob. With the seizures and the elevated fever, they decided to move us to the ER. Dr. E. was rushing downstairs, and decided to push Jacob herself over to the ER in his stroller! Gemma with her red wagon couldn't even keep up with Dr. E's run for the ER! It was quite the sight!

Dr. E. definitely wanted Jacob in the ICU. She felt that since he had gotten sick so quickly and sudden, we still didn't know if he was going to get sicker or stabilize. I didn't like his heart rate of 170 despite him only resting in bed. It took 9 hours to break the fever despite several doses of Motrin and Tylenol. None of us liked the pattern that Jacob is getting sick again as soon as he stops antibiotics.

I swapped off with Joakim at night, so I could be with my sister her last night, and take her to the airport in the morning.

The good news is that Jacob seems stable. We're moving up to the 8th floor this afternoon. Nothing has grown out of the blood culture, which might indicate that this is a virus after all.

We're going ahead with the Miracles for Mito fundraiser tomorrow. If you have your Sunday open, please stop by my house between 2-4 pm for some jewelry (all proceeds from the sales go straight to Miracles for Mito) and refreshments.

I am hoping my next update will be from home, and an update from aunt Jenny's visit!

Much love, Maria.

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