Saturday, June 11, 2016


We're home. We all take a big sigh of relief. We can all go back to normal. Let's wait a second. Life with Jacob is not normal. It's unpredictable. It's intense. It's ever changing.

I have my moments when I look at myself from the outside, and I stop myself in my tracks. Today, I made it up to Ward on my bike. As the other bikers were refueling and talking about where they would ride next, I was trouble shooting Jacob's edema from the top of Ward. Should we do another dose of diuretics today? Should we call the doctor on call to discuss yet another plan for the weekend? What was his weight today? How much had he peed? Pooped? My brain thinking about what I might have missed, what I need to do to stay a step ahead of my boy.

And then I have moments like tonight with Jacob. Jacob had taken a late nap, and was wide awake at bed time. He had no interest in sleeping despite seizure medications on board. We read books and sang songs, and Jacob vocalized and gave out his big sighs of feeling well. It's such a simple moment, a parent putting their child to bed, something most parents simply take for granted. In our home it's a sacred moment when all stars align. No high heart rate, no stress to Jacob's body. Just Swedish children's songs and happy books.

I felt a little lost taking Jacob home this time. I felt a little overwhelmed with his care at home. We're getting once again best friends with a new specialty, nephrology. Being best friends with the kidney center is not something you want to be, but it's where we are today. It's a lot at stake to manage Jacob's fluid status where messing with his electrolytes can be life threatening and make our boy very sick. Blood draws, daily weight checks, measuring all urine and stool output.

But living in the hospital is no life. We got really close with our medical intern this time. She saw my anxiety rise as we were talking in the morning of discharge. Wasn't Jacob's stomach a little more distended this morning? Jacob had a little more secretions this morning. What about if Jacob's oxygen would drop at home? This is from the mom who has taken her child home over and over again. I just felt nervous about how Jacob would do at home this time. The intern convinced me that there was nothing they would do in the hospital, I couldn't do at home. Jacob was ready to go home, and we're still home after four days.

We made a change as we went home. We signed up with Denver Hospice. We quit Children's palliative/hospice program during this hospital stay. It probably warrants its' own blog post, but it was never a good fit for us. We are not changing the course of Jacob's care right now, but we want to make sure we have someone on our side in case Jacob suddenly get worse or God forbid an unexpected death in our home. We want to find a partner before we are there. We want to find a partner who shares our views of quality of life for Jacob.

It's emotional. It's not something you want to have in place for your child. It's overwhelming to have multiple people call every day to check on Jacob and wanting to come to our house. I am told over and over again, I am in charge. This week, I felt far away from being in charge. I felt I was drawn in multiple directions of work deadlines, new day nurse in training, barely any night nurse coverage, and people wanting to have serious discussions with me about Jacob's health, life and goals. It drains you emotionally.

The best way to describe life right now is that I ended up on another planet. A planet that is far from normal life, but a planet I so desperately try to keep in my life. A planet full of love and difficult decisions, a planet hoping that Jacob will prove everyone wrong one more time. Managing that planet with normal life is exhausting, but also a way of surviving. You need both. It's just hard to shift gears when you have a slightly squeaky wheel.

So to the planning person I am, this is the time to realize I am not always in charge. I can't or won't plan. I will have to go with the flow, and see where it takes us next. One step at a time into the unknown.

Love, Maria.

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