Wow! What a difference a couple days can make! Wednesday afternoon we were able to talk to one of our neurologists. Our opinion was that Evangeline needed to go back on a medication that she had been taking for a long time but had recently stopped. He agreed with our assessment immediately. We knew there was no guarantee that it would cause Evangeline to return to where she had been previously, but we had to try in order to reverse the downward trend she was experiencing.

On Wednesday afternoon we re-started the medicine. After sleeping most of the day Thursday, Evangeline has been a different child. Today she has started wiggling around again on her mat much like we were seeing a couple weeks ago. She hasn’t started being as verbal yet as she was, but perhaps that will come with time. We are so thankful that the doctor was on the same page with us and that taking the medication again has seemed to bring such a dramatic change. There may very well still be some ups and downs, but for now we praise God for this development!

Unfortunately Evangeline seems to be sliding downhill again. Her seizure activity has increased significantly over the past few weeks and she is less active and less verbal. We are responding with more aggressive respiratory therapies which seem to be helping. Our goal is to keep her respiratory function as high as possible in an attempt to avoid another hospital stay. We are consulting with our neurological team and hope to develop a plan moving forward as soon as possible.

One of the biggest frustrations with Evangeline’s situation is the constant ups and downs. We can never seem to arrive at a stable place. Less than 3 weeks ago she was laughing! The highs and lows are a challenge. However, we are confident that God has Evangeline in is His hands. Please pray that we can achieve more stable seizure control and pray for our family as we navigate this roller coaster ride.

Evangeline has enjoyed a good week. The regiment of respiratory therapies has enabled her to get stronger. She has begun to roll back and forth and even had a few moments of laughter earlier this week.  Check out the video below!! This was a heart-warming moment especially due to her recent struggles.  Her week has been otherwise uneventful.  We are so thankful to see her navigating some good road.  We pray that she will continue to improve.

On Friday morning  the topic of camping came up during breakfast conversation among the children.  When the older children were younger, our family had set out to go camping twice a year – once in the Spring and once in the Fall.  As you may imagine, life continued to get busier and camping fell by the wayside.  Since moving into our current home however, Mom has suggested occasionally that we could camp out in the backyard. 

Because of the breakfast conversation, the two youngest children (above Evangeline) were intrigued and really wanted to have the opportunity to experience camping since they had no previous memories of these events.  Word of the desire to camp in the backyard bubbled up to Dad shortly after breakfast.  He was still upstairs and had not been privy to the breakfast table conversation.  Of course, the children thought it would be a fabulous idea to do it immediately that evening.  Their logic was impeccable – the weather was going to be great and “we really want to!”

Dad knew that it would be a good idea but was reluctant to jump on board the train rapidly departing the station for camping in the backyard. Eventually, Dad gave in and helped lead the charge to make it happen!  Hot dogs, chips and ingredients for s’mores had to be purchased.  The tent had to be setup and arranged with the appropriate sleeping bags.  A fire had to be started. What Dad thought was going to be a challenging, time-consuming process worked out smoothly.  In the end, the family had a great adventure cooking out and camping in the backyard.  Mom, Dad, and all the children enjoyed the experience immensely!  (Mom, Evangeline, and one older brother slept inside.)

This may make your heart melt!

Over the weekend we realized that Evangeline had gradually been having more difficulty breathing. It seemed to follow finishing up the antibiotic on Wednesday. By Sunday morning she was laboring to breathe and at times oxygen didn’t seem to help as much as we would like. After consulting with our care team, we implemented a heavy regimen of respiratory therapies. The hope was to reverse the downward trend and help Evangeline improve her respiratory function. Mom immediately laid out an aggressive schedule to follow. By the end of the day on Sunday, Evangeline looked much better.

The last few nights, Evangeline has done much better at being able to sleep more comfortably. It is not unusual for her to wake up in the middle of the night, but in prior nights she had been restless and uncomfortable. Since beginning the aggressive respiratory therapies, she has maintained a very good oxygen level at night and even slept without oxygen last night.

It seems that Evangeline is improving at a slow pace. Mom has reminded us that it took Evangeline a month-plus to get better after her previous hospital stay.

The rest of the family is doing well. The younger children are enjoying being outside during the beautiful weather we have been experiencing. The older children keep plowing ahead towards finishing up the school year. We are thankful that Dad’s employment has been unaffected by the pandemic.

We appreciate several families from church blessing us with meals during our transition back to “normal” life with Mom and Evangeline at home. It certainly helps to ease the burden of food preparation. You know who you are – thank you!!

Please pray for Evangeline to continue to get stronger and for her respiratory function to improve. Thank you for your prayers! We pray that He would return the blessing back to you!!

Evangeline arrived home safely on Monday evening. Her oldest sister observed that she had a noticeable change in disposition at one point that evening. She seemed to relax upon realizing she was at home.

Evangeline did require a low level of oxygen the first night but has maintained satisfactory levels at night since then. We would like to see her be able to sleep more soundly during the night.

She continues to get stronger and is noticeably happier being at home. She is still having neurological events which we hope will improve as she gets stronger. We are also waiting to see exactly where her seizure activity settles on the new medicines.

We appreciate your continued prayers for her and our family!

We began this morning with negative test results for all respiratory illnesses including Covid-19! Mom was relieved to stop wearing all of the protective gear.

Eva has had no fever today. We are guessing that yesterday’s fever may even have been neurological!

We are awaiting the urinary culture to verify that Eva does not have a UTI. It is still a definite possibility that she does and might require further antibiotics, but the absence of fever seems to point away from that.

The big news is that Evangeline is being discharged today!! The doctors have given the green light for us to go home.

We are excited to be bringing Evangeline home and look forward to a time of better seizure control so that she can start getting stronger again.

We continue to appreciate your love and support and prayers! Thank you!

Today was not the day we had hoped it would be. It started off promisingly with Evangeline being almost entirely weened off of oxygen. The doctors even considered sending her home today!

However, Evangeline spiked a fever out of the blue with no obvious cause. The first suspect was a urinary tract infection. The initial tests for that have come back negative. This threw a wrench into the plans because with no obvious reason for the fever the hospital is concerned that she may have the Coronavirus. Therefore, Evangeline and Mom have been re-quarantined late this afternoon. Mom must again wear all the protective gear to be around Eva. This evening we did receive the test results for respiratory illnesses other than Covid-19 – all negative. Hopefully the results of the re-test for Coronavirus will come back sometime tomorrow.

Evangeline is back on a higher level of oxygen and is generally uncomfortable. Mom is suspicous that this may all still be linked to a urinary tract infection. The lab will continue to grow the cultures and see if it eventually turns out to be confirmed.

Thank you for your continued prayers! Tonight, we would ask you to pray that Mom and Evangeline can get some rest. We sure would like to see Eva moving towards coming home again.

Today has been a day of progress!

Eva produced three wet diapers completely on her own today, and we were finally able to help her have a significant bowel movement. She has got to feel better with all of that stuff out!

Eva has also spent several hours this afternoon completely off of oxygen. Such an amazing milestone! As the evening is coming on, she may require a low level of oxygen to help her sleep comfortably. This would not be a setback, and we anticipate being completely off of oxygen for good soon.

We have also been able to continue weaning down on two of Eva’s seizure meds without adverse effects. This is a huge win! The EEG has shown us that she continues to have seizures we cannot physically see, but today Eva enjoyed quite a bit of awake time with little seizure activity noted by Mom. Our goal is to reach a good balance between seizure control and alertness to achieve her best quality of life.

Your love and support and prayers mean so much to our family! Thank you!

Today was a good day. Evangeline got off the EEG. The neurologist believes we have learned what we needed to learn from it and no longer need it. Eva loves not having a bunch of wires glued to her head!

We believe we have reached a good level for the new seizure med and are currently weaning down on two of her old seizure meds.

Eva’s oxygen needs have stabilized and even lessened today. We are heading in the right direction!

Eva had quite a bit of awake time today and even had a bath. We are hoping for another good night of sleep.

We are still waiting for Eva to urinate on her own without our intervention and to have a bowel movement that she desperately needs.

Your continued prayers are so appreciated!

Evangeline had another relatively good day today. Her oxygen saturation levels are not improving as quickly as we might like but she is stable and still battling to get rid of the pneumonia. The doctors are still working on tweaking the meds to try and get the balance right for improving her seizure activity but also not have her be so sedated that she is inactive. This process is going to take several days. However, we are pleased that they can make adjustments very quickly since we are in the hospital.

One area that is being closely watched is her urological functioning. Prior to entering the hospital she already had difficulty with bowel movements. The last couple days she has not released her bladder in a regular fashion. A plan has been fashioned this afternoon to try and help improve this function.

One good piece of news: Evangeline moved one step down from PICU this afternoon. I think everyone feels that she is moving in the right direction currently. The progress is slow but we pray it continues.