I realized at around 3:30 this afternoon that it was unlikely that we were going to hear from the neurology office today and that we were heading into the weekend without any answers.
And so, sounding truly pathetic, I called and left a message for her pediatrician on the nurses' line, asking them to take a look at the recent MRI results and to please call me back so that they could hopefully tell me that what I was looking at wasn't as terrible as it seemed.
The nurse, who was actually the first person to suggest apnea, three months before she was diagnosed, and a full month before anyone else even considered it, called back immediately and said she could definitely see why I was nervous and that she'd make sure that either she or the doctor called back before the end of the day.
She called back a couple of hours later with great news.
She said that the doctor said that it's a historic bleed. At some point in the past, deep in her brain, Tessie had a bleed, but they don't believe that it's clinically significant at this point.
So it looks like we haven't uncovered the reason for her central apneas, but it also wasn't the horrible thing it sounded like it was when I read it myself.
And that is your Friday night update!
Thank you for all your prayers! Hopefully we'll hear that the genetics tests has been approved and we'll be able to answer that question once and for all soon.
I thought it might have been a bleed at birth or shortly after. (NICU mom here.) I didn't want to say anything and risk being wrong and scaring you. I know she's not a preemie but they tend to be common in preemie and the kids are usually fine afterwards.ReplyDelete
Oh great news! I am happy that it isn't nearly as scary as it could have been! Will continue to pray for your little gal!ReplyDelete
Thankful for the good news and that you received it before the weekend! Continuing to pray for Tessie!ReplyDelete
Does that mean the apneas will eventually stop?ReplyDelete
I really hope so but they didn't seem to think that the bleed in her brain has anything to do with her not breathing. I'm hoping the neurologist has more answers.Delete
Hang in there Mama! We've been down this same road with PICU, apneas, PHOX2B testing, MRIs, brain bleeds, tube fed kids, etc. I know it isn't easy and the worry is constant. Know you have my prayers and understanding.ReplyDelete
A friend of mine's child had had a brain bleed. They went in for an unrelated reason and it was discovered then. She also freaked out, but it's real common especially if the baby is born vaginally. Her baby was only two weeks old at the time (if I remember correctly). Think head squishing. Usually it doesn't affect anyone. Not sure how helpful the information is, but for readers in the future.... Her child is fine and in second grade.ReplyDelete