October 8, 2007

On hold, again

We had to get up at oh-dark-thirty this morning, as my brother-in-law would say, to get to CHOP to meet with the pediatric neurosurgeon this morning. We did not receive a lot of new information, except that it is a near certainty that Whitney will need a shunt if her lesion is repaired after birth.

On Friday, we learned that Whitney suffered a small amount of bleeding in her choriod plexis at some point earlier in the pregnancy. The choriod plexis is a gland present on both sides of the brain in the ventricles that produces cerebrospinal fluid. The bleeding does not extend into the brain itself nor did the blood spread into the ventricles (where the cerebrospinal fluid circulates to bathe the brain). On Friday, the obstetrician told us that he did not believe that this choriod plexis hemorrhage would exclude us from the study, but that the pediatric neurosurgeon (who was out) would need to make the call.

Turns out, the pediatric neurosurgeon cannot make the call after all. The National Institutes of Health (NIH) does. NIH funds and oversees MOMS. CHOP is concerned that the bleeding may exclude us from the study. The doctors are all of the opinion that the choriod plexis hemorrhage is not significant. But the protocols for MOMS exclude babies with any bleeding in the brain. The doctors rationalize that this was intended to exclude hemorrhages that occur in the brain itself and the ventricles, not the choriod plexis. The doctors have contacted the National Institutes of Health to recommend that we be permitted to participate in the study if we choose. Now we have to wait for them to respond.

Apparently, NIH has received the data and CHOP hopes to have an answer by the end of the day. Cynically, I'm well aware that this is Columbus Day, one of the umpteen holidays given to federal employees in lieu of decent pay. Hopefully, the right people are not taking the day off so that we'll really get an answer today. In any event, I highly doubt that we would have surgery tomorrow if we opt in. Another day without Fiona . . .

4 comments:

Anonymous said...

Nelson's, I haven't been on your blog in a few days, but I want you to know that Susan and I are praying for you every night and want to thank you for the updates.

Josh Cnossen

Melody Timmerman said...

Thanks for the update. I have been checking your blog all morning hoping for some news. Sorry to hear that it is not "over" yet. I will continue to pray for an answer yet today so whatever the two of you decide can be decided. I am so glad that you had a great church experience. Sounds like a home away from home. How wonderful that there were fellow believers in the Lord lifting up your daughter in prayer. What a blessing to have experienced it and a place you can call "home away from home". Please when possible keep us all updated about what is going on there. I am anxiously awaiting to see the Lord at work in your lives. In Christs love, Melody

Anonymous said...

Matt and Susan,
We are praying for you- hang in there...waiting can be so frustrating!!!!! Put your trust in Jehovah and take deep breaths!
We love you!
Love in Christ,
Laura Wiese

Nancy Dyke said...

Susan,
We missed you this morning at BSF. We are all keeping you, Matt, Fiona and Whitney in our prayers. We pray that you will be unified in your decisions and that whatever you decide will be God's will.
Love, Nancy