I ended the week with a massage. A massage I had rescheduled multiple times since August. The first question I was greeted with was about my son, how was he doing? I had rescheduled a few too many times due to our hospital stays.
As the massage therapist started to work on my shoulders, she immediately asked how long it had been since my last massage. 20 days in the hospital in the last month was my answer. It was that true good pain when the therapist truly gets into your knots.
This is what happens every time we have high stress with Jacob. I keep my calm, but the stress builds up in my body. It starts with the neck, it transfers to the shoulders, and then it hits the upper back. Every single time. It doesn't help to have slept on the hospital couch for way too many nights. My body is hurting.
High stress with Jacob keeps my mind very busy. I am a worry monster, and when I do know something is not alright with our boy, my mind keeps buzzing. It is also hard to have new nurses and residents caring for Jacob every 12 hours, many who are meeting Jacob for the first time. There are misunderstandings, and we feel we are "on" around the clock to make sure Jacob receives the care he needs. It is stressful, and I am glad Joakim is ready to listen when I need to get things off my chest or I will burst!
Jacob did come home Tuesday night! Home, but still very much hospital sick. We are doing bi-pap trials at home, which is a first for us. We typically stay in the PICU for bi-pap trials. This means Jacob's lungs are not strong enough to expand without the pressure of the bi-pap opening up his lungs when he breathes. We have an elaborate schedule for when Jacob is on and off the bi-pap for over a week's time. Looking at our bi-pap trial schedule, we would have easily stayed another 1,5 weeks in the hospital. We weighed our options carefully, and felt that we could manage this at home, since we know there is no place like home for our boy. We also know it can take weeks or even months before Jacob can fully recover this time.
It has been a very busy week. Wednesday, I was honestly questioning if we had done the right decision bringing Jacob home. There was no time to eat or go to the bathroom due to the care Jacob needed. Little by little, Jacob has taking steps in the right direction. It might not always be obvious day by day, but he is definitely better tonight than a week ago.
The reason we bring Jacob home early from the hospital is that in the middle of intense care, we find our moments of happiness, family time, and gratefulness for Jacob's amazing strength. Each moment eases my body and soul.
Jacob getting outside for the first time in one month time:
Jacob hard at work making his purple Epilepsy awareness Pumpkin project:
Send positive thoughts, vibes and prayers that Jacob can continue to stay home!