Daily dose: Friday, April 24

Mommy holding Hope during her EEG

Hope had a very tiring day today. It started with two episodes overnight that were pretty severe. The doctors let Mommy & Daddy know that one of the episodes overnight required bagging to bring her back (always scary) and because of that Hope would be getting a blood transfusion today, hopefully to help her out a bit, and that they want to conduct an EEG to rule out seizures as a possible cause for Hope's frequent episodes.

Before Hope could get her transfusion, the nurse had to do a blood draw to get a CBC, CRP and a "newborn screen" since Hope is now well over 4 months old. This meant multiple pricks for Hope, so by the time all the info for the blood transfusion came back her blood level was EVEN lower!! She did receive blood in the very late afternoon so hopefully she will be feeling a little better later.

As you can see from the picture, Hope had many electrodes attached to her head for about 30 minutes to measure all of her brain activities. The results came in at the very end of the day. Hope is apparently at risk for seizures, but none occurred during the test (which is obviously the case because that's always what happens, or so it seems!!). The kind of good news is that this rules in seizures as a possible cause for her episodes, however the bad news is that it ruled out nothing, which makes Aunt Em think we have made no progress, but they have given some possible causes to the seizures: (1) insufficient respiratory support; (2) neurological issues; (3) reflux (which would add Hope to the list of family members with reflux); (4) low hematocrit, aka blood levels; (5) floppy airway. This used to be the end of the list but NOW we have added...... (6) infection, like sepsis or UTI; and..... rounding out the list...... seizures!!!! This list is not making Aunt Em very happy AT ALL, so I can't even imagine how Hope is feeling about it all.

We are all hoping that we will make more progress next week in ruling OUT possible causes, not ruling IN more. Seriously, shouldn't the list be getting smaller???