A REMINDER FROM OUR MITO KID

Tonight Jacob gave us a reminder that he is a Mito kid. Jacob has been doing so great this past year that we sometimes almost forget that he is living with Mitochondrial Disease, and that he can get very sick, very fast.

Jacob had a great day today. He in fact went to see his pulmonologist for a regular follow-up. He thought Jacob looked great, and that he didn't have to see him again until the fall. Lungs sounded clear :-

We spent some time outside in the afternoon, and had a relaxing Friday evening. This is Jacob on the couch with sis right before bed time - no sign of being sick!

Sarah and I have started to read Harry Potter together every evening. We were laying in her bed reading when Sarah decided to ran over and check on Jacob, since we could hear his pulxe ox beeping. She came back telling me Jacob had a fever?!

Fever? 104?! Where did that come from? I saw my Friday evening with my hubby, a movie and a glass of wine quickly disappearing. From the look of Jacob, and his heart rate staying steadily at close to 180, we had to pack up and go. We knew seizures could come on board any time.

We're definitely out of practice, but I pretty quickly got an overnight bag together at the same time as Joakim loaded the car with Jacob's stuff. Sarah stayed with Jacob, talked to him, and hold his hand that was shaking from his myoclonus.

In the car over, he started to seize. We knew that was coming with such a high fever. We never want Jacob to have a seizure, but it is a very effective way to avoid the completely crowded ER waiting room on a Friday night, and get a bed in the trauma unit right away.

The verdict is that Jacob has a pneumonia. It looks like a full blown pneumonia rather than aspiration pneumonia, which honestly really sucks! We almost went a year without pneumonia, and now it is time to say hello once again...Jacob is on IV antibiotics, and he is getting IV fluids. He has struggled with his breathing, and has been really obstructive. He is on 2 liters of oxygen right now, and they are using a hard collar to help with his obstruction.

We have a long night ahead of us, since we're going to spend the night in the ER. The PICU is full, and Jacob is definitely too sick to go to the floor. He was earlier tonight choking on his secretions, and turned blue. We know the floor doesn't like to manage that with several patients per nurse.

Jacob is not yet asleep. I am hoping he can get some rest tonight, since he will at least have a bed. I got a more comfortable chair that can recline. I know I won't sleep, but that's ok.

We know we caught this very early, so we will see if Jacob stabilizes overnight or if he first will get sicker before he gets better. I am not sure if that makes sense, but we sometimes see that with Jacob when we catch things early.

And I end tonight with a photo of our stinking cute little boy in school yesterday!

Send positive thoughts for a quick recovery for Jacob!

Love,
Maria.