WHAT A DAY

I know you have all stopped at a red light and looked over to the car next to you because the music was simply too loud. The car is shaking, and you wonder what they are up to tonight! That was me tonight. I had my radio on the highest volume, my sun roof was open, and I couldn't care less if someone heard my music. Behind my black sun glasses I had tears coming down. Tears from being completely exhausted. Tears from being worried about Jacob. Tears of relief that Jacob had stabilized once more in the ICU.

What a day! I don't even know where to start. I felt it was a very bad omen when my necklace with my kids' birthstones fell into the drain this morning. I was able to get the necklace up after a few tries, but I couldn't recover Jacob's birthstone. I felt it was a bad sign considering Jacob being in the ICU. Jenny and Sarah agreed. We all being superstitious.

Things were going in the right direction in the ICU. Mid-day we were up on the 8th floor again. The team was immediately not happy with Jacob's breathing. I agree, it wasn't perfect, but I have heard worse. His oxygen level was 100% on 0,5 liter of oxygen, so didn't feel it was too much too worry about. His feet were cold, his color wasn't the best. I agree, but I have seen so much worse.

I had basically 3 doctors coming in and out of Jacob's room all afternoon long. Their communication was poor, I felt their respect for me as Jacob's mom was not there. I was told by one of the doctors that the other doctor thought Jacob was seizing all the time. I got very annoyed, since Jacob was NOT seizing. I was told that they wanted to put Jacob on the bi-pap for 24 hours despite his oxygen level being fine. I told them that it will freak Jacob out completely. The solution for them was to simply sedate Jacob. I was really annoyed, and said that I wouldn't allow that. I guess they were thinking it over, and decided that there is a possibility to increase the oxygen level first before sedating a kid??? They were debating if they would give him motrin or not for a low grade fever. One saying one thing, the other one saying another thing.

I am used to be Jacob's advocate, I am used to fight for both of us - but it is exhausting. It is very exhausting to fight for your kid getting the right care, and not get the doctors carried away with more tests, more EEGs, and more medications. It was a long afternoon. You realize it when you haven't eaten or even had time to go to the bathroom for hours.

The bottom line is that Jacob is sick. They stopped his antibiotics this morning, since he hadn't spiked a fever and looked so much better. The truth is that Jacob is fighting a big infection, and needed the big gun antibiotics. As soon as he got a dose of Vancomycin this afternoon, things settled down. Heart rate went down, breathing got better, fever went away. The ICU team was surprised to see him back, but he freaked out the doctors on the floor today! Better to move down to the fish bowl once again.

It is still unclear what Jacob is fighting. It could be a line infection from the medi-port being used for 10 days. It could be the pneumonia still lingering. The chest x-ray from this afternoon didn't look as good as the one from the ER last night. It could be something else. All his values and indicators are off, so there is definitely something going on.

I was impressed with the ER respiratory therapist coming up and assessing his breathing. He could immediately tell that Jacob didn't have an issue breathing, but that his irregular breathing came from his neurological status. Very interesting, and it made sense to me, seeing how hard he was fighting his fever. This is also the guy who intubated Jacob 2 years ago. He remembered exactly the day he intubated Jacob and in what room of the ER. I must say I was impressed. He told me that certain kids and situation simply stick to his mind. Jacob being on of them.

Joakim and I are both in the PICU tonight. That is typically a sign that we don't want to stay far away from our little man. Sarah moved her sleepover to her friend's house, and is having a good evening.

After today's excitement, we're hoping for a quiet night in the PICU. Maybe another try for the 8th floor in the morning?

Much love,

Maria.