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! 

It is Friday afternoon. Again, so much has happened since our last update! I must confess that I was happier to write yesterday’s update than today’s. The short story is that Evangeline is back on the BiPap machine. She had a bit of a rough night last night. She was being weaned from sedation, and she became keenly aware that her throat was soar from being intubated. She coughed and could not settle down to sleep. Evangeline may have also been having some minor withdrawals from the sedation medicine and certainly could have her days and nights mixed up from being in the hospital. Regardless, she did not sleep well. We estimate that she may have gotten two or three solid hours of sleep. I was less than thrilled with her lack of sleep the night before, but it really did not seem to bother her. She was alert and even seemed chipper this morning.

Evangeline began to have a low-grade fever early this morning, and we were not sure if it was neurological. There did not seem to be a physical cause.  Late this morning her oxygen began to go below 90%, and we could not seem to stabilize it. We were still not sure if all of this was neurological or physical. As we worked with her, I noticed that she was becoming more and more agitated. I began to suspect that Evangeline was actually reaching a place of extreme discomfort or even a little pain from whatever was happening, and I sensed that the cause was physical and not neurological. The doctor ordered a chest X-ray and did not like what he saw.

Everything happened so fast at this point, and Evangeline was quickly transferred back to the BiPap machine for additional lung support. Of course, she needed to go back on the sedation to tolerate the mask. She is now resting fairly comfortably and getting the breathing support that her lungs need. We hope that we will be able to wean her back to high-flow oxygen tomorrow. Perhaps, she just needs a little more lung support, respiratory therapy, and time. We are grateful that we did not have to return to the ventilator. That would have been a setback. This is just a little bump in the road. I am now hopeful that we can return home at the beginning of next week.

Through every step of this journey, God remains faithful. He is good, and we continue to trust Him. This is not a surprise to Him.  Please continue to pray for Evangeline’s healing. We take nothing for granted!

So much has happened since our last update! It took Evangeline several hours and multiple seizures (with a little help from some medicine) to finally settle down and rest with the mask on her face. She was truly not a fan, but I don’t know if I would be able to rest with a scuba mask strapped to my head blowing gusts of air into my eyes and entire face! The good news is that Evangeline, again with the help of some medicine, was able to rest with the mask on over night. The doctor came in this morning and declared that it was time to take the mask off and put her on a high flow oxygen machine. She continues to improve and is weaning down steadily lower on the level of oxygen required. We are so very grateful for this miraculous progress! I was even able to bring up that beloved word “home” today to the doctor. He did not deliberate long before saying that he thought Saturday or even tomorrow late in the day could be a possibility. How can I express to all of you my joy to be discussing going home at this point when such a short time ago I was preparing my heart and our family to say goodbye to our precious little girl?!? My heart is full as I think about the miracles that He has worked in Evangeline in the last week or so. I am grateful for the loving care that we have received from so many doctors and nurses here in the PICU. I am grateful for all of your prayers, encouraging words, and sustaining meals given to our family. We are blessed to be part of such a caring and supportive community! Most of all, I am grateful that the Lord has walked every single step with us through this. I can truly testify with David in Psalm 23:4 that even “though I walk through the valley of the shadow of death, I will fear no evil, for You are with me”. If you do not yet know the love of God Who “so loved the world that He gave His only Son” Jesus Christ as our Savior, there is no better time than right now to come to Him. If I can play any part in that for you, please do not hesitate to reach out to me.

Thank you for your continued prayers! It can get particularly tricky for Evangeline when she gets healthy enough to recognize and become distressed over the fact that she is in the hospital but not yet healthy enough to go home. Seizures and neurological activity during that stressful period can actually reverse her progress and keep us in the hospital longer. It has happened before, and we ask you to join us in praying that it does not happen this time. If she is healthy enough, we would love to go home tomorrow and sleep in our own beds. God is good. We continue to trust Him as we walk this journey.

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.

Evangeline continues to do well. She has been resting comfortably both yesterday and today. We are preparing to remove the machine by giving her times of breathing on her own with the machine as a backup.  They are conducting a trial right now for about an hour. So far, so good. We are planning to extubate Evangeline tomorrow morning. Every indication is that she should be ready. Her lungs are strong and breathing well on her own over the help of the machine.  The inflammation which caused Evangeline’s earlier upper airway blockage has been addressed by medicine. The doctor would prefer to extubate sooner rather than later now that she has been on the machine for a week. The unsuccessful attempt on Sunday has made us justifiably more cautious, so we plan to bring her off the machine in an even gentler way. They are going to use a Bi-Pap, something similar to a C-Pap, machine to assist Evangeline once she is off the ventilator. The hope is that after twenty-four hours or so we can begin to wean off the Bi-Pap. The doctor explained that the risky part will be getting off the ventilator. Once that is successful, it is most likely just a matter of time before Evangeline will be strong enough to breath on her own without any assistance. It is too soon to tell how long that process will take. We must get through tomorrow and get her off the ventilator. We cannot know without trying if Evangeline is going to be too weak neurologically. If she cannot come off the machine tomorrow, it may be that her brain is no longer up to the task of her ever breathing on her own again bringing us back to having to make end-of-life decisions. No one thinks that is where we are, but we must acknowledge the possibility. We continue to walk in the truths that God is good, He is sovereign, and He loves Evangeline even more than we do. She is His daughter. He holds her in His very capable hand. We trust Him.

Please pray with us as we ask God to give Evangeline the strength to breathe on her own.  Thank you for your continued prayers and words of encouragement.

It is Sunday evening. Evangeline is resting comfortably. It looks like that is going to be our holding pattern for the next few days. It is impossible to look into a crystal ball and know how exactly this is going to go. God holds all of this in His hands. We trust Him.

I wish that I could report that Evangeline is now breathing on her own off of the machine, but that is not how it went. Evangeline had passed several test runs and was breathing on her own with the help of the machine. Unfortunately, when they removed the machine, inflammation in her upper airway made it impossible for her to clear anything from down in her lungs. It did not take very long for her oxygen numbers to begin to plummet because of the upper blockage. Her CO2 level started climbing, and her healthy lungs were actually beginning to weaken and fill with fluid. The doctor determined that it was in Evangeline’s best interest to put in another tube and get her back on the machine.

In speaking with the respiratory therapist this afternoon, it was not a setback to have to re-intubate Evangeline this morning. Her lungs were ready. They were not the problem. The problem was inflammation in her upper airway from the tube itself. There was not really a good way to know that was going to happen until we tried to extubate her. Now we know. They are giving her some meds to help with the inflammation. A smaller tube was placed during the re-intubation that already seems to be easier for her little body to handle. A few more days should help the inflammation to go down. She should be even stronger. My hope is that we may be able to give it another try off the machine by Wednesday. We should certainly be discussing it by that day assuming that Evangeline continues to progress nicely. Obviously, no assumption is safe. I am simply preparing my heart for a longer stay.

As I have reflected on all of this today, it would be real easy to feel discouraged by the day’s events. However, I bring it back to simply being grateful that the Lord has granted us more time with our precious little girl. She is His daughter, and He loves her even more than we do. None of us is guaranteed another day, and Evangeline provides a consistent object lesson for each of us of that truth.

Thank you all for your support!  It is so appreciated!  We welcome your continued prayers for Evangeline over the next few days.  Please pray that she would get stronger and her upper airway inflammation would decrease.