Evangeline was able to return home last evening!  We are thrilled to have her back with the whole family.  She has continued to do well on her treatment plan and slept pretty well overnight.  

As life starts to return to “normal” I would ask that you keep her and our entire family in your prayers.  Of course, there is a tremendous amount of illness all around and we desire to do our best to protect Evangeline without operating out of fear.  We believe God is in control and taking care of her and us. 

Mom could also use your prayers as well since she bears much of the weight of caring for Evangeline on a day to day basis.  As you may imagine, hospital stays are very draining for her.  Please pray that we can help her to get some rest and refreshment over the next few days before the new year starts.

Thank you so much for all your prayers!  We deeply appreciation your care for our family.  

The last 24 hours for Evangeline have been very good as she is trending in the right direction.  Her aspirational pneumonia is responding to treatment, and we are hopeful that she will be able to come home tomorrow.

Yesterday was a a bit of a roller coaster, so we are glad to see the current trend.  She woke up after a good night and seemed to be in good spirits.  Then she took a turn for the worse as the pneumonia flared up.  The effects of the illness hit her fast and hard.  In the afternoon, the Pediatric Intensive Care Unit (PICU) doctor came to visit her because it looked imminent that she was going to have to move to his floor for additional care.  By that time she had received some antibiotics but extra seizures had left her tired and unable to give a strong cough.  During the doctor’s visit, Evangeline repositioned herself and coughed.  It turned out to be exactly what she needed!!  After observing this, the doctor had the medical team reduce her oxygen and her numbers held stable.  Since that time she has steadily improved.  It seems to be the Lord’s hand at work!

Thank you for your prayers.  We appreciate your love and care for us and Evangeline.  Please keep praying that she will continue to improve – the rest of the family is anxious to have Mom and Evangeline home!

Yesterday was a relatively good day because the whole family got to go up to the hospital and visit Mom and Evangeline.  We enjoyed spending time together even though it wasn’t exactly the Christmas for which we had hoped.

Overnight Evangeline did well and we were all hopeful that today would be the day that she would get to come home.  Unfortunately, this morning has not gone as planned.  Upon awakening Evangeline seemed agitated and Mom thought maybe it was due to her being ready to come home.  But, as the agitation continued and seizures occurred, it appears that other factors may be at work.  Based on her physical symptoms, and a recent lung x-ray, the doctors are concerned that she may have developed aspirational pneumonia.  This is always a danger for Evangeline because of muscle weakness in her upper chest and neck.

At this time the plan is to begin treatment for pneumonia with antibiotics and increased respiratory therapy.  Evangeline is currently on the regular care floor but her oxygen needs are near the max they can offer.  There is a potential that if she does not respond to these treatments as quickly as the doctors would like, or if her need for nursing attention increases that she would have to move to the Pediatric Intensive Care Unit. 

Thank you for your words of encouragement and prayers for our family!! We sincerely appreciate them.  Please pray that Evangeline would respond to these treatments and the pneumonia would not progress. 

A couple weeks ago Evangeline got a cold.  As she was finishing up with the cold, she got hit with a 12-hour stomach bug that saw her unable to keep anything down, including seizure meds.  This all led to a significant amount of seizure activity.  ‘

Last Sunday we determined that we thought she may be okay to travel for our Christmas trip.  After arriving at our destination Evangeline did not have a good day.  We administered some rescue medication that we hoped would help her through the difficulties.   The medication improved her condition making Tuesday and Wednesday good days.  However, Wednesday evening the problems returned.  Early Thursday morning we decided we needed to return home to be close to our preferred hospital. 

This roller coaster of events culminated in a trip to the Emergency Room this morning.  The doctors administered heavy doses of medication to stop the seizure state that had overtaken our precious little one.  This evening Mom and Evangeline are settled in with the doctors monitoring to see how she responds. 

While this is not the Christmas we expected, and it is difficult to have Mom and Evangeline in the hospital, we still celebrate Jesus as the reason for this holiday.  We appreciate your prayers for our family during this time. 

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!!

A couple weeks ago I contemplated writing an update just to let you all know that Evangeline was improving after her last hospital stay.  Her seizure activity seemed to be reduced due to the increase programed into her VNS device.  Well…as we have come to expect from Evangeline, things can change quickly.

On Monday she experienced some unusual fever activity – one side of her body was registering a significantly higher temperature than the other.  After much debate and consideration about heading to the ER, we decided to wait just a little while to see if we could get her fever to come down.  Gradually it did so.  Throughout the day she seemed to improve ever so slowly.  Tuesday morning she awoke without a fever.

Evangeline had been scheduled for a doctor’s appointment with lab work on Monday.  However, due the circumstances referenced above, we had to cancel it.  Since Eva was feeling better on Tuesday, Mom re-scheduled the lab work for Wednesday.  Therefore, yesterday afternoon she had blood drawn for analysis.  Then, just before 5 pm, the doctor’s office called to tell us that Evangeline had some concerning numbers for which they had no explanation.  They encouraged us to take her to the ER right away.  

Mom and Dad arrived at the hospital with Evangeline just after 7 pm.  The medical team spent all night assessing her condition and waiting to be admitted to the hospital.  The nurses had a terrible time getting an IV placed – it took 3 different nurses and an ultrasound device to finally get it completed!  Sometime during that process Evangeline fell asleep and slept soundly until she was moved to a room in the hospital between 4 and 5 am.  Needless to say Mom and Dad were wiped out by then!

Today has been a good day.  Evangeline seems to be doing well and the doctors are just trying to figure out what the issue may be.  The problem seems to be that she is having an issue absorbing the nutrients.   There may be an imbalance of good vs. bad bacteria in her gut – possibly as a result of the administration of antibiotics during her last stay in the hospital.  There may also be some drug interactions that may be causing some problems. 

Please pray that the doctors can figure out the cause of these anomalies.  We are entirely unsure how long this hospital stay will last so prayer for a quick resolution is appreciated as well! 

Evangeline was able to return home late Thursday afternoon.  Praise God!!  This was one of the shortest hospital stays she has ever experienced and we are thankful she is home.  The last several days have been hectic and I apologize for not updating sooner.  Thank you all for your prayers during this time. 

One of the factors that was affecting Evangeline just prior and during the hospital stay was a slight cold.  It seems that she continues to have some congestion and throat irritation from this but last night she was more alert than she has been lately.

We appreciate your continued prayers for Evangeline.  She is one special little girl!

Everything seems to be going as well as it could go in the hospital as of right now.  Evangeline had a good overnight and the hope is that she will be able to go home today.  The cardiac care team started her on a medication last evening that will be a maintenance med in hopes of avoiding any additional instances of heart racing.  They are observing her but there do not appear to be any adverse reactions to the medication so far.

Evangeline does have a small cold that seems to be contributing to some seizure activity and just generally annoying her.  The neurology care team is taking a wait and see approach to any medication changes.  We are in agreement with this plan and will help her get past the cold before we evaluate her seizure burden.  The doctors will be making some adjustments to her VNS which have been planned for a little while now.  We are hopeful that the increase in stimulation will be beneficial to Evangeline.

Thank you for your continued prayers!  We appreciate them!  Would you pray today for Evangeline to get past this cold and that all continues to go well so she can come home today?