Tuesday morning (Day 5) started with a very helpful phone call from the neurologist
The rest of the day was rather uneventful with only a few hiccups.
The one major hiccup was that Henryk’s blood draw, for telling us where his phenobarbital levels are, showed that he was not yet up to the “therapeutic level”—which is about 23 (he was at 13). So we needed more phenobarbital.
Why did this happen? Probably because he spit out most of his initial dose! His original dose yesterday was 20mL. His maintenance dose that he took today was about 2 mL. This maintenance dose is what he will take daily for the first 6 months.
Since his level was low we gave him 10 additional mL to get his levels up. Hopefully tomorrow morning he will be at the 23 “therapeutic level.”
Also today Emily witnessed seizure like movements. We really want to get his phenobarbital in line, and we are praying it works and that he would not have any more seizures.
His blood work and cultures came back negative. And they already have stopped 1 of his 3 antibiotics.
The goal is that by tomorrow he can be done with the other two, have his phenobarbital checked, and then get discharged!
Please pray for God to use medicine to stop Henryk’s seizures and heal him.
- Had an early morning phone conversation with the neurologist
- The neurologist will be a long-term specialist for us who deals with pediatric stroke patients
- He gave us new insights into Henryk’s condition
- He also agrees that the strokes are done
- He doesn’t even remember a case where strokes continued after birth
- He also gave us a new potential cause of the strokes that seems to make sense. So far we’ve tried all kinds of blood tests. From Day 1 they tested Michael and Emily but all tests were clear. And all Henryk’s blood tests are clear.
- Well, the neurologist confirmed that he thinks the blood and the brain structure and the vessels were not the problem. Since there were multiple strokes he doesn’t think it was blood consistency or vessels, but rather a drop in blood pressure during pregnancy, like a decreased blood flow from placenta or umbilical cord. Something like that.
- This explanation seems to make most sense, and it also seems that this confirms that most likely the strokes are over
- The neurologist believes Henryk will face many challenges in life. Their aim is to get his care and therapy moving forward. Henryk will most likely face motor skill challenges (cerebral palsy) and speech challenges. Because there were strokes on both sides of the brain it will be more difficult to compensate.
- An MRI and hematology testing will take place around 1 month
- Until then we are to treat Henryk like a normal baby and love him like crazy
- Henryk will be on seizure medicine (phenobarbital) for 6 months