Evangeline was able to come home this evening! We are so thankful! The doctors today worked with us to monitor Evangeline and provide reasonable criteria for her to come home. Late this afternoon we were released and Evangeline is back at home with the whole family. We are delighted to have her and Mom back home!

Thank you to all who prayed for Evangeline and our family during this time. Evangeline is so complex and her health challenges are so great we welcome your continued prayers for her.

Evangeline had a horrible overnight. She was cranky and crying for much of the evening – and she is not usually a cryer!! As you might imagine, this was very difficult to Mom to handle. Although Evangeline was exhausted she couldn’t settle down enough to sleep. By morning Evangeline had only gotten about an hour of rest.

This morning Evangeline had several clusters of seizures and we agreed with the doctors to try a different rescue med. We were hesitant to use this particular medicine because in 2018 it had wired Evangeline instead of helping her to rest. It appears that this time it has had the intended effect and Evangeline is currently resting.

The conversations with the doctors on the floor today have been helpful and there is a possibility that Evangeline could still go home today. Please pray that she will get the rest she needs. This is critical because when she is weary her seizure threshold is lowered. Thank you!

Evangeline had a horrible overnight. She was cranky and crying for much of the evening – and she is not usually a cryer!! As you might imagine, this was very difficult to Mom to handle. Although Evangeline was exhausted she couldn’t settle down enough to sleep. By morning Evangeline had only gotten about an hour of rest.

This morning Evangeline had several clusters of seizures and we agreed with the doctors to try a different rescue med. We were hesitant to use this particular medicine because in 2018 it had wired Evangeline instead of helping her to rest. It appears that this time it has had the intended effect and Evangeline is currently resting.

The conversations with the doctors on the floor today have been helpful and there is a possibility that Evangeline could still go home today. Please pray that she will get the rest she needs. This is critical because when she is weary her seizure threshold is lowered. Thank you!

Well…today was going well for Evangeline until early this evening. She had been cleared to go home by the neurology team and pulmonologist. The general peds team was hoping that she would clear some final hurdles before allowing her to be discharged.

Around 6 o’clock Evangeline entered what we have come to term a “neurological event”. These events are random periods of time when she has difficulty maintaining her oxygen saturation level. In our experience, these events do not have anything to do with a physical problem but are neurological in nature. Needless to say, this is very hard to convince the medical professionals.

Evangeline seems to be very frustrated with still being stuck in a hospital bed and restricted by all of the wires and tubes. She is especially frustrated with the nasal cannula.

Please pray peace and healing over Evangeline so that she can meet enough milestones to come home. This evening Mom could also use your prayers as the stress of these setbacks on the verge of being released is difficult. Thank you for your support!

After Evangeline’s surgery on Wednesday afternoon, Thursday did not see quite the improvement we had hoped. She was not able to wean off of the “high-flow” oxygen and she spiked a fever in the evening for some unknown reason.

After a restless Thursday evening ,Friday was a very good day. She was able to reduce her level of oxygen support and was slept soundly when resting. Mom was able to return to feeding her via her G-tube just like at home as well. All of these are good signs for Evangeline to be able to return home.

It looks like Evangeline may be able to come home on Sunday at this point. We continue to pray that all will staying moving in this direction. Thank you for your prayers of support and healing!

Evangeline is out of surgery and everything went well. The doctors indicated that everything was routine and there were no problems with implanting the VNS device.

The doctors will now monitor her recovery from surgery and seizure activity to determine when she can go home. We are hoping by Friday or Saturday. Your continued prayers for a speedy recovery are appreciated!

Last evening Evangeline completed her MRI and was intubated to keep her sedated until her surgery today. During this process her hands are restricted in order to keep her from messing with the breathing tube. However, on several occasions she has scooted herself down in the bed in order get more ability to move her hands. It seems that her metabolism rather quickly processes the sedation meds so the nursing team had to administer additional meds to keep her asleep.

We will not know the results of the MRI until Thursday afternoon sometime. One of the primary reasons we had this done again now is to see if any additional cerebral atrophy is occurring. At two years old she had an MRI that indicated she had brain mass shrinkage compared to the MRI at six months old. We are praying that this MRI does not show additional brain mass loss although that may be unlikely.

The last 18 hours have been rather uneventful since Evangeline has been sedated. This has allowed Mom to get some rest so that is positive. The rest of the family seems to be getting along well, but we are all anxious to get Mom and Eva back home.

Evangeline is headed into surgery to implant the VNS device. This surgery will take 1.5 – 2 hours. We covet your prayers for our sweet girl. Thank you to all of you who have already been lifting her up!

Evangeline has had a relatively good day. With additional loading of drugs, her observable seizure activity has been significantly reduced. One of the decisions that was approaching but pushed into high gear due to her hospital stay is surgery to implant a VNS device. The neurosurgeon was in today and has setup Evangeline for surgery tomorrow.

Since Evangeline will be placed under anesthesia, there were a couple other procedures that we had been waiting on which are also moving forward. One of those is an MRI – she is headed in for that in the next half an hour or so. Although this should be fairly routine, it is always a bit nerve-wracking to have your daughter put under anesthesia.

After her MRI she will intubated and sedated until after the VNS surgery tomorrow afternoon. Please pray for all to continue to go well and for God’s healing hands to be upon her.