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 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.