Saturday, June 4, 2016


Three Saturdays I go, we got a rude awakening that Jacob was getting really sick. That led to seven days in the PICU with a very sick boy. It was an emotionally draining ICU stay with slow, slow progress. I felt as if I were on an emotional roller coaster 24/7 as I was trying to care for my boy, and juggling all other balls in life at the same time.

Last Saturday, I was texting nurse Gemma in the morning as she was asking how our boy was doing. Tears were falling as I was telling her that I didn't know if he would make it through this time. Jacob just wanted to sleep. As Gemma and I were texting back and forth, Joakim texted me to let me know one of his seizure medications was extremely elevated in his blood and could explain his sleepiness. Joakim and I were not sure that was the cause, but we were holding on to hope. And are we happy we were holding on to hope. As his Phenobarbital got back to Jacob's therapeutic level, we got our boy back. It has been slow progress and a lot to figure out with Jacob's fluid and nutritional status to get him back to baseline. I'm so impressed with our intern this time. She's thinking about everything, and is such a passionate person. I can see she loves caring for our boy, and she just soaks in all that new learning. Caring for Jacob never follows the text book.

Yesterday, Jacob looked so good. He was using his talker for the first time in weeks, and as I came in to the room, Jacob said: "hi mom". I also asked him if he wanted to go home, and he said: "yes, yes, yes".

Today, we were going to watch Jacob a last day before getting discharged in the morning. Prescriptions were all filled, all specialties involved were consulted, and a going home  plan had been agreed upon.

Unfortunately, Jacob had other plans. Our kid has come down with a big nasty infection. All lab results are through the roof. As the doctors are trying to find the source of his infection, they have already started Jacob on IV fluids and the big gun IV antibiotics. I feel we just lost two weeks, and are starting right back where we were three Saturdays ago. Everything they are doing tonight, they did in the ER 14 days ago. The only good thing is that he has not needed any extra respiratory support. He has been good all day on room air or nasal cannula.

I'm exhaused, sleep deprived, and worried. How we all had looked forward to be home together tomorrow instead of once again trying to figure out who should be where when for yet another week. And then there is our brave boy. He just turned a corner in the last couple of days, and is tonight back to square one again. In the middle of everything, I just sincerely hope we can quickly figure out what's going on, and help Jacob to feel better.

Tonight, I am hoping for answers and a little bit of sleep.

Love, Maria.

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