Evangeline’s transition from this life to the next happened this afternoon just after 1 pm surrounded by family and friends.  She peacefully passed as we all broke down in tears mourning her loss.  Our family will forever carry her in our heart but miss her deeply already.  We love you forever Evangeline!

We will host a visitation (2 pm – 3:30 pm) and memorial service (at 3:30 pm) on Friday afternoon December 23 at Northwood Baptist Church (2200 Greenridge Rd, North Charleston, SC 29406).

Thank you for your prayers of love and support during this time.  We covet your continued prayers as we grieve the loss of our precious little one.

As I sit by my daughter’s bedside waiting for the end to inevitably come, I watch thinking of the immense love I have for her. How can a little girl who is incapable of any “normal” physical activity – like running, smiling, or even pouting – be breaking my heart into so many pieces?

I wish I could take away all the pain and suffering. But God didn’t give me that assignment. My assignment was to be a steward of this precious, beautiful girl for a brief 6 years here on Earth. It’s a privilege that I am thankful for and, yet, ever so challenging. The assignment to take away pain and suffering was given to Jesus Christ. He will do that for her in the not too distant future. For now, I must continue to pour out the love for her that He has deposited in me.

I wish that, at any moment, Evangeline would wake up and be the vivacious, precocious 6 year old we all think she would be. I have lived several years now hoping and praying for a miracle of physical healing. For whatever reason, God has chosen not to grant that request here on Earth. Does that mean He is not good? It may be easy to think so but I believe the answer is no. She has challenged us – just like her middle name says – to have Faith in the plans of the Almighty even though we can’t understand His purpose.

Without a doubt, we can say that we would not be the family we are today without Evangeline. Without any specific action on her part, God has used her to transform each of us in some ways we understand now and some ways we won’t realize until sometime in the future. And, really, isn’t that the best gift she could have given us? We love her with all our heart and, through the process, God uses her to change us into His image. Sounds like a pretty important job for a severely disabled little girl!

Run on home to your Heavenly Father, Evangeline. We will always love and miss you deeply!

The doctor’s are keeping Evangeline comfortable as we wait.  It is clear to all of us that her brain is not capable of sustaining the processes necessary to keep her alive.  Everyone on her team has the goal of a peaceful end.  Please pray that God’s mercy will continue with us through this process.

Unfortunately, we do not have happy news to report.  Evangeline took another turn for the worse this afternoon.  She was off the BiPap mask and doing well and then, in a matter of 20 minutes, her oxygen level tanked without an obvious reason and the team could not get it back to suitable levels. Therefore, she was returned to the BiPap machine and given a rescue medication.  It is possible she had some sort of seizure that was unobservable.

At this time her breathing looks good and she is resting comfortably.  However, she cannot live her life under constant sedation.  The primary PICU doctor has requested ENT take a look down her throat to see if there may be any physical cause for the upper airway problems.  The chances seem quite slim that this is the case.  It appears that the problem may just be neuromuscular in nature meaning that Evangeline’s brain is not properly maintaining her airway to breathe on her own.

There have been quite a few tears this afternoon in our household and at the hospital.  The future for Evangeline is unclear.  Given her severe neurological problems it is difficult to see her surviving much longer.

In the midst of writing this Evangeline crashed and nearly when into cardiac arrest.  There are very few options left.  We have called our family to have them come say good-bye.  Please pray for strength, wisdom, and comfort.  Jesus, be with her, Amen. 

Evangeline is having trouble settling in to sleep this evening.  Being on the BiPap mask is frustrating her and she doesn’t seem to want to rest.  Today has been a disappointing day for me (Dad). I am reminded this evening as I pray for Evangeline that she is not my child, but God’s.  He loves her even more than I do which is hard to imagine!

Please pray that Evangeline can rest and that she can progress towards being off of the BiPap machine again tomorrow.  Thank you for your prayers! 

Evangeline has successfully been extubated this afternoon.  She had a couple setbacks this morning that delayed her extubation.  First, she had an oxygen desaturation event early this morning.  Second, the IV in her arm became dislodged and was running fluids into her body rather than her vein.  With these two issues the doctors wanted to wait through the morning to remove her breathing tube. 

In the 1 o’clock hour Evangeline had several seizures fairly close together.  It appeared to both Mom and I that she was awake enough to become stressed dealing with the continued presence of the breathing tube.  We felt it was important to get her off the machine sooner rather than later.  The doctors agreed and proceeded to remove her tube and place her on a BiPap mask.  So, this afternoon, she is laying in bed looking like she is on a mission to outer space.

The working plan is to see how she does on the BiPap for about 24 hours and hopefully wean her tomorrow.  Please pray that she can tolerate the mask and that she will continue to progress towards being able to breathe again on her own.

Today the doctors put Evangeline to the test – they let her breathe on her own for about an hour.  She did very well!  This is a positive sign!  Everything seems to be pointed in the right direction for now. Thank you for your prayers of healing for our precious little girl!  We so appreciate your support.  

Today we continued to see Evangeline take baby steps in the right direction. She did take some breaths on her own today – yeah!! That is positive because when a person is on a ventilator they can lose the ability and strength to breathe themselves. Evangeline even responded to mom saying her name today. Amazing since that is not even a regular occurrence in every day life! The doctors did discover that she has a Strep A infection along with a secondary infection causing a UTI. She is already on antibiotics, but as soon as they determine the specific bacteria, they will target the antibiotics to fight those infections. Eva has been hooked up to an EEG for a day or so and is having some seizures but nothing remarkable for her. In fact, the EEG technicians monitoring her even asked if she could get off of monitoring because she was the most boring EEG they were watching. This is a first! Therefore, the EEG leads were removed from her head helping protect her skin from irritation. Finally, Evangeline has had some periods of alertness today. All of the signs seem to continue to be positive.

Thank you for your continued prayers and support! It is wonderful to know that so many people are lifting us up in our time of need.

Unfortunately, we had to take Evangeline to the ER late yesterday afternoon. She has been ill with sinus congestion for about a week now and rapidly declined today. When we arrived a whole team of doctors and nurses immediately jumped into action tending to her. She was far worse than was evident to us. The doctors were very concerned about her breathing. “This may not be survivable” is not something you want to hear about your child. Ultimately, the choice was to intubate her or let her pass. We were not prepared to lose her immediately and felt that intubation was important to give us time to think and potentially identify a cause for infection.

It is possible that much of this is neurological, and her brain is not able to help her other biological processes fight it off. While this situation seems dire, we are confident that the Lord is in control. As I prayed in the ER, I acknowledged that Evangeline is not our child. We are only her stewards while she lives here on earth. I am exceedingly grateful for her impact on our family. 

Overnight she has remained stable through sedation.  The doctors are testing if they can determine any underlying cause of illness.  The results of a CT scan before moving to PICU last evening showed additional brain atrophy from her last MRI.  While this is not good it is not unexpected given her condition.

Please pray for healing of our daughter and pray for wisdom as we make decisions and trust Him through this process.  We appreciate everyone who has reached out to us!