Wednesday, June 6, 2012


It is summer. School is out. We have warm sunny days. The pool is open. The garden is blooming. Flip flops are building forts on the floor. Towels and bathing suits are wet. Air condition is on. Bird song is waking us up in the morning.
But wait a minute! Jacob is in the Intensive Care Unit with pneumonia and possibly pseudomonas. That doesn’t fit in with the summer break we were all longing for. Our little boy is really sick once again. He had a 40 minutes (!) seizure followed by a fever yesterday morning. That gives Jacob a free pass to Children's Hospital. Dr. E. didn't even want to see him, she wanted us to take Jacob straight to the ER!
In the ER, Jacob swapped rooms three times! He started out in a regular room, but since his oxygen requirement went up, the nurse moved him to a more central room right outside her desk. After a choking incident on secretions, Jacob was finally put in the trauma unit. I am forever grateful that I had Gemma and her ED friend in the room, since we were able to stabilize Jacob quickly. I could never have suctioned him, and gotten him upright at the same time. It was definitely a scary moment. This was also one of those ER visits where Jacob got from sick to worse to really sick. When we got in, we thought that we might even be able to take Jacob home. When Joakim swapped off with me at night, it was clear that Jacob would go to the Intensive Care Unit. He had once again seized in the ER, he had a high fever, constant thick yellow secretions, high heart rate and needing the bi-pap to breathe.
It is confirmed that Jacob has pneumonia and possibly pseudomonas. This looks unfortunately like an aspiration pneumonia. I almost feel as if Jacob is even sicker today than yesterday. He spiked a fever of 105.8 (!) this morning, and it is now close to 5 pm, and he is still running a fever. Not as high anymore, but still a high fever. Secretions are just non-stop...Heart rate is high, and there is not even talk about trying to breathe without the bi-pap. Maybe tomorrow...
Sarah is definitely feeling that this hospital stay is throwing a dent into her summer break. Over dinner, we both tried to do small talk, but we both knew that our minds were with Jacob. Sarah's body and face always give her away. In the middle of dessert, she asked: "mom, why is Jacob getting so sick each time?". So, we had a little talk about his Mito disease. Sarah is fighting to be a good sport about her brother, but I can see signs all around her that this is a tough stay for her. She'll come in and see her brother tomorrow. Sometimes that is simply the best medicine.
And when we are not at Children's, we do enjoy summer! On Friday, we simply had a true summer day at the pool all of us, Jacob even took a nap in the shade, and we got to catch up with our good friends from Boulder. Sarah is on a swim team with a good friend, and they are having a great time together! She is also starting up golf lessons next week as well.
On Saturday, we all ventured out to see Jacob's best friend Selina perform in her dance recital! She did wonderful, and Jacob gave her roses after the performance. It was definitely a special moment for us all. We have had to once again push out our trip to the zoo with Selina, but we will make it happen this summer!
Thanks for all the well wishes for our little boy! I haven't been great about keeping up, since it has been really busy in here, but please know that I appreciate each of you.
To a summer out of the hospital!
Much love,

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