After waiting over the weekend for the dietitian and neurology team to weigh in on how to start feeding Evangeline again Mom and Dad were very disappointed when no one showed up from that team until mid-afternoon on Monday.  Unfortunately it seemed that there had been a miscommunication because the neurology resident (she had not known Eva prior to this) showed up with the attitude “you can start feeding however you want.”  What!?!  Needless to say this was not what Mom or Dad wanted to hear.  Even though Dad was on the phone from a location away from the hospital he expressed his displeasure with the unfolding situation.  Thankfully, the doctors finally understood the urgency of the situation. 

Once the doctors left the room they almost immediately returned.  The dietitian was now on the phone, the pediatric doctor overseeing Evangeline’s care reappeared in our room, and our primary neurologist also joined via phone.  Finally, Mom and Dad got the answers they needed to start feeding Evangeline again!  She had been fasting for 3+ days and it was time to do something!

The care team begin feeding Evangeline last night. She did well. Upon testing her triglycerides again this morning they had finally returned to a normal level.  All of her vitals are holding steady.  The dietitian will be working with the care team to gradually increase the feed over the next several days.

Evangeline and Mom are both doing well.   Please continue to pray for Evangeline to do well as the feed is increased.  She has to get back up to full feeds before a plan for discharge can be evaluated.  Thank you for your continued love and care.

After the very high triglycerides level on Friday, one of the doctors suggested having Evangeline fast and retest the levels.  After being over 3x greater than a “high” level on Friday morning, the blood test on Saturday morning had dropped substantially down to a level within the high range.  To say this was very surprising to the doctors is an understatement!

All conversations continue to center around Evangeline’s gut flora and it’s interaction with the ketogenic diet.  She is in a holding pattern for now until the dietitian engages in this whole picture again on Monday.  

Evangeline seems to be in a fairly good mood, and she is not having hardly any visible seizure activity.  Mom is as settled as she can be in her temporary hospital home.  The children at home are missing Mom and Evangeline but pressing on with their daily routines.

Please pray for wisdom for the doctors as they determine how to proceed with Evangeline.  Also, please ask God to supply all that the other children need while Mom is away.  Oh, and Dad still has a professional exam coming up later this month!  Thank you – we appreciate your support!

Today has been a busy day with many doctors in and out.  The main problem right now is that the triglycerides in Evangeline’s blood are extremely high. She cannot go home while they are really high. The doctors are not entirely sure why they are so high.  There is an apheresis procedure that can attempt to bring them down. Unfortunately she cannot be fit into the schedule until Tuesday afternoon.  Then the doctors will need to monitor her for another 48 hours after that. 

From the conversations surrounding all the digging to try and determine  the issue we seem to have ruled out a drug interaction.

One other emerging thought is that at the forefront of the discussions is an imbalance in Evangeline’s gut flora.  She received a very heavy dose of antibiotics last time she was in the ER and this may have thrown off her ability to absorb nutrients probably.  It is not entirely clear how they can “officially” determine if this is the case but it will continue to be investigated.

In this process Evangeline is not having any outward manifestations of seizure activity.  She has, in fact, been seizure free for 5 days.  Dad and Mom are curious if there is anything the medical team can learn from this experience about how Evangeline processes nutrients and any type of connection to seizure activity.  Please pray with us about wisdom in this area.  

Thank you for your continued support in prayer!!