Wednesday, April 6, 2011


Getting ready to leave the house in top 5 minutes for Jacob and me is an art. It is something we have done endless times. I have gotten so good at it that I most of the time can make my my laptop, and some food be part of the plan.
I guess we're out of practice leaving the the few minutes it takes for an ambulance to come to our house from a few blocks down the road, we did not bring:
- the medications stored in the fridge
- Melotonin stored up in Jacob's room
- enough syringes to get the evening meds ready
- enough diapers
- bi-pap mask
- drink for mommy
- food for mommy
I did leave the house with the big kitchen bag full of medications, Jacob's feeding pump, Jacob's diaper bag, and my lap top bag pack. The paramedics wondering, if I had planned to move in to the hospital. Me saying that it was very likely. They smiling as they were helping me in with all the luggage.
I definitely felt out of practice from not having to need the paramedics in 4 months. Out of practice to call Dr. C. in the ambulance trying to quickly summarize what was going on. None of us truly knowing which IV seizure med is working the best for Jacob after all the things we tried last year. Strategizing and coming up with a plan. The best mental medication to me in an ambulance.
It is a good thing to be out of practice, but it is hard to see Jacob sick again. We were all hit by strep and some sort of virus this weekend. For the rest of us, no big deal. Not even worth really talking about. For Jacob, a completely different story.
The first sign of Jacob getting sick was a 30 minutes seizure prompting that 911 call. As Jacob rested in the ER, his breathing got labored and his secretions increased. We were under "observations" in the ER. As the hours passed by, I was truly on the fence if we should stay or go home. I expressed this concern to the doctor, and Dr. E. told me later that they had called her, and said that they were admitting us based on the parents' assessment.
Jacob did pretty ok over night, so the next day we decided to take Jacob home. We're now at the end of day 4 of this illness, and Jacob is still fighting. He had another long seizure over night last night. He is on oxygen 24/7. Suctioning is the charma in our house.
We're out of practice. It hurts my whole body when I hear how obstructive Jacob is. Seizure alert is high in the house. The suction machine and oxygen concentrator are going warm around the clock. We know that we might be back at Children's any time, if Jacob is not improving. One day at a time.
We're out of practice, but as Dr. E. said: "that is a good thing".
Love, Maria.

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