From perfectly healthy to seriously ill

Olivia and I on her 3rd birthday just a week before her 7 day hospital stay

Two weeks ago on Tuesday, February 26, Olivia woke up at 6 am crying. As she was walking out to me in the living room, I just assumed she had woken up a little too early and that was why she was crying. Little did I know that in just a few moments our whole world would change. Just as I picked Olivia up, she had a seizure in my arms. The seizure lasted about 3 minutes and then Olivia fell fast asleep.

Olivia has had a seizure before, but the scary feeling of watching a seizure doesn’t go away. However, since it seemed to be very similar to her first seizure, I called my pediatrician’s after hours service to ask if I should take her into the ER or wait until their office opened. They told me that as long as she woke up fine, we could just bring her into the office as soon as it opened. No sooner had I hung up the phone than Olivia did wake up. But instead of just being sleepy and tired like she was after her first seizure, she immediately had another seizure. This one was a little longer, and I knew something was clearly wrong.

We quickly made arrangements for the boys and jumped in the car to head to the ER. In the car Olivia had yet another seizure. Once we arrived in the ER, Olivia continued to have more seizures. Most of them were between 3 and 5 minutes in length. At that point she was starting to lose oxygen and her lips and face were turning blue. Like really blue. We were incredibly thankful to be in the ER where they could quickly give her oxygen. There is nothing more helpless than watching your daughter have seizures and just standing by waiting for them to stop. The ER doctors ended up giving her extremely high doses of 3 different medicines before we could get the seizures under control.

In the Emergency Room Tuesday February 26

We were then transferred to the ICU where Olivia could be closely watched to make sure she didn’t have more seizures and because she had so much medicine in her system. She ended up staying in the ICU for three days. (The entire hospital stay was 7 days).

After only a couple of hours of heavy sleeping from all the meds, Olivia then started having horrible (and I mean horrible) episodes of intense screaming, thrashing, and serious hallucinations. We fell into a pattern of a long thrashing episode that would suddenly stop as Olivia fell into a restless sleep in my arms. Then she would briefly wake up. She was clearly not herself and was incredibly confused, and then would launch back into another episode before dropping off to sleep. This lasted for 5 days.

It was such a helpless feeling. When Olivia’s episodes were at their worst, it would sometimes take four adults to hold her down simply so that she wouldn’t hurt herself. As it was, she managed to scratch and bruise me pretty well. It’s awful to have your daughter screaming, “Mommy, hold me” and you are holding her and she doesn’t even realize it. Or when she would scream that she was falling, and no amount of my holding her tight and telling her she wasn’t falling would help.

Initially, the doctors locked into the fact that she was just having an intense reaction to all the medicines in her system. But logically that should have started to improve as the meds wore off. It didn’t. Then Olivia started running a fever and had severe diarrhea.

I would be holding back part of myself if I did not tell you that I had some very dark moments in the hospital room. It is not very comforting to have a doctor tell that they were wrong about the first diagnosis and that now we were back at zero not knowing what was wrong.

It was scary. And it was physically exhausting. The first 5 days I never got more than 20 minutes at a time of sleep and those were while holding Olivia sitting up in a hospital bed.

Thursday night was by far my darkest night. Alone in the hospital room, Olivia had just had an intense 20 minute episode. She had finally fallen asleep in my arms and I just put my head back on the hospital bed and with tears streaming down my face cried out to God, “Is this the new Olivia?” “Are we every going to see her personality back like we knew it?” “Will her brain ever recover?” We knew some of the specific things the doctors were looking for and none of it was very comforting.

We finally got an official diagnosis on Saturday, 5 days after being in the hospital. Olivia got the flu (yes, the flu!) but instead of having the typical effects of the flu, it attacked her brain. This ended up causing encephalitis, which is inflammation of the brain.

Anytime you are dealing with the brain, it is scary stuff, but we are happy that the doctors do expect a full recovery. It will, however, take some time, and she is doing rehab right now with physical, occupational, and speech therapy.

[Update: A year later, we feel that “a full recovery” was probably a bit optimistic. We do, however, feel that with the right kind of help Olivia can learn to overcome the challenges that she now faces. You can read this to see what kind of long-term health complications can occur with Encephalitis. Olivia has quite a few of these.]

Each day Olivia makes some progress. We are seeing the most progress in her physical development. Her cognitive and speech progress is much slower. There are good moments and bad moments, and good days and bad days. Overall, we are on a slow upward trend and we are grateful, but Olivia still has moments of not being herself at all and of being completely out of character. This is really hard to watch, and it is taking much wisdom to know how to handle each situation.

We are so incredibly thankful, though, that when we were bracing ourselves for the worst, the diagnosis came as a relief. It isn’t desirable, no, but it was a relief.

To be honest, I’m still wrapping my head around it all. The flu? Really? It can cause this serious of an illness and long-term recovery? Yes. It can. Unusual and rare, but it does happen. And for whatever reason God chose it to happen to our family and to Olivia specifically.

What about the seizures? Well, we are still unsure and the doctor’s are a little slow to make a specific diagnosis on that. We are following up with a pediatric neurologist to monitor that part of Olivia’s care. We are praying that she won’t have any more, though realizing that the likelihood is pretty high that she will.

This week my goal is to adjust to a new normal. It is a new world to be driving to therapy and dealing with an extra needy child. It is definitely an adjustment for the entire family and it isn’t easy. But our family and friends have rallied around us and we are grateful for the amazing help and encouragement we’ve received. We are literally at a point where we can’t do it by ourselves, and we are so thankful for the help.

Just a few days before, and the Olivia we can’t wait to see again!

My goal as a mom for the next couple of months is to to do everything in my power to give Olivia the right kind of care so that she fully recovers. I also want to make sure that I am meeting the emotional needs of the rest of my family. It has been a traumatic 10 days for all of us.

It isn’t easy, but I am confident that God will graciously carry us through.

Thank you all for your Facebook notes, tweets, and emails. Knowing that you were praying for Olivia means so much to me. And I am grateful that God chose to answer our prayers. Thank you for continuing to pray for our family as we adjust, and for Olivia’s full and complete recovery.

 

Comments

  1. Oh friend, I ache for all you’ve been going through! I can’t imagine what it’s like to be on that side of the hospital bed… but I certainly know the struggles of trying to find a new normal. Take it slow. And know that many, many prayers are going up on your behalf! {{hugs}}

  2. I am so sorry Johanna. We will continue to keep your family in our prayers as you adjust to your new normal. Thank you for sharing all you have been through, it is humbling. Hugs to sweet Olivia, and Stefan and Silas too!

  3. I am so sorry about your daughter’s illness. I heard about your situation through your father-in-law on Facebook and have been praying for you and your family ever since. I can only imagine how hard it must have been to not only watch her have seizures but also the outbursts. It is good to hear that you have a lot of support from your friends and family. And I will continue to keep you and your family in my prayers.

  4. Wow. What a week. Matt and I just read this together at Noodles &Company and we are rejoicing in the positive update. You all have been in our thoughts and we have prayed for Olivia and all of you. She has the sweetest face that girl!

  5. So scary. Thanking God for modern day medicine. Praying.

  6. Paul Dobbins (Buddy) says:

    When I was four years old I contracted encephalitis due to a measles infection. I was hospitalized for several days in a coma, and when I woke up I was blind, mute and had forgotten how to walk. My parents had people praying for us all over the country. I lost all of my memories up to the point of the initial convulsions and the vomiting. I also remember the intense dark hallucinations you describe. My father always said that my personality changed a bit. I became fearful of a lot of things. Loud noises, large vehicles, the dark, and being alone was all it would take to start me crying. I am 54 years old now and I overcame those fears in my young adulthood.
    .

  7. My heart goes out to your adorable Olivia and to your whole family. I am praying for you all as you go about the necessary steps for her full recovery. I have personally seen God’s miracle working power up close and personal in my son and I have no doubts you will continue to see that power at work in your daughter as well. It is tough though and you guys have been through such a trauma. My thoughts and prayers are with you and I send love and support your way. Although we don’t know each other, please don’t hesitate to ask if you have any questions regarding therapies, insurances, resources etc or if you just need to chat.

    • Thank you SO much. It feels good to know those who are familiar with the whole process as we are in totally new territory.

  8. Dad and I just read this together– and yes, cried together! We know how difficult a trial you are going through. But we also thank the Lord for the grace He is pouring over you to endure and continue on. As much as we long to be there, we are grateful for the family and friends who have stepped up to help you. But say the word — and an ocean won’t keep us away!
    Lots of love to all 5!

  9. I praise God that he is all powerful, all sovereign, and all kind all the time. He never leaves his children and never leaves his children to battle a trial alone. I’m praying for his grace to be abundant to you and your family. I’m praying for you to find rest in Him, even through your exhaustion. I pray your faith will not waiver but will only be strengthened as you see his specific care and love for you all.

  10. Read this and cried. Can only imagine the darkness of some of those hours. Praying for you friend. Thankful for the peace the Lord has given.

  11. so scary — make sure you reach out for help and allow other people to help you. you’ll stay in our prayers. xoxo

  12. Jeanne Hayden says:

    Thank you for sharing your incredibly difficult story. I am a 77 year old Mother, wife, grandmother, teacher. I know that deep saddness. Thank the LORD that perhaps you are on the upward trend. Our hearts are knit with your hearts and we are saddened, crying, but praying, that GOD WILL GIVE YOU THE PEACE THAT PASSETH ALL UNDERSTANDING. LET NOT YOUR HEARTS BE TROUBLED. YOU BELIEVE IN GOD BELIEVE ALSO IN ME…JESUS SAID I AM THE WAY THE TRUTH AND THE LIFE. COME UNTO ME ALL YE THAT LABOR AND ARE HEAVY LADENED AND I WILL GIVE YOU REST.

  13. Wow, it sounds really awful to go through all that ! So thankful for the diagnosis and that she is recovering. Will be praying for the weeks ahead !

  14. Oh, Johanna, that was a hard read. How terrible those dark hours in the hospital. The fear, the questions, the lack of sleep. We were praying for you all those days, but only now after reading this I realize more of the extent (not the FULL extent, I am sure) of what you went through. So thankful you are home now, and we will keep praying as you adjust to the new normal and seek for wisdom for each situation. I saw a video Donna posted with Olivia laughing on a swing, and it was like a breath of fresh air – will pray for more moments like that to become “normal” also. Much love, Elly

  15. We’ll pray for your family.

  16. You, Olivia and the rest of your family will continue to be in my prayers.

  17. Thank you for sharing. We continue to pray for healing for Olivia and for grace for you to be the wife and mommy God has called to you be this day – week – month – and year. May you entrust your souls to a faithful creator while doing good (1 Peter 4:19).

  18. Johanna, I wept with you as I read through this!! How scary this whole ordeal must have been for your mothers heart to helplessly witness!

    While I don’t claim to know all of what you are facing, having never experienced a completely healthy child turn seriously ill overnight, I do know how emotionally and physically it can be to care for the needs of your child along with going from not having clear answers to trudging along the long road of recovery. I say this also to tell you I can’t even count the number of times the Lord has and continues to bring you and your sweet family to my thoughts and each time He does I pause to pray.

    As I’m sure you’re discovering, it’s often two steps forward one step back in the world of of therapy but each step taken shows significant progress!! Sometimes I’ve learned that the step back allows even more room to take a larger step forward the next time. I’ll be praying specifically for marked improvement for Olivia in the areas you mentioned.

    Thanks for taking the time to update us. Praying for continued strength and wisdom for you and your husband and asking the Lord to give Olivia complete healing and a full, smooth recovery.((Hugs)) to you, friend!!

    • *emotionally and physically exhausting

      • Hi HollyHow about Princess Armidala from Star Wars II Attack of the Clones. Tight white pants, white belt, and ripped off short slevee crop top with your hair done up at the back in plaits.Good luck and have fun.Karen

      • That’s a smart way of looking at the world.

      • Is that really all there is to it because that’d be flabbergasting.

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  19. Wow! I always cried with every update you posted or every photo I saw about sweet Olivia and knowing it that I few days ago I saw you and she was do happy. Thankful for the diagnostic and that you are at home. I am praying for you guys, Our Lord is good and is with you <3.

  20. Cindy Yacko says:

    So very sorry to hear what all this sweet, adorable girl is going through, and what your family is going through.
    Just want you to know, that the whole Yacko family is praying for all of you. GOD is and will always be there with all of you, and will see all of you through, even in the darkest times.
    Praying always.

  21. Thanks for sharing your account and I hope it was cathartic for you somehow. I know how priceless it is to know and feel and experience the love of others coming alongside you in times of deep darkness. Our family has been there in different ways and times, and boy I don’t ever want to go back there again, but I am so changed and remolded by all of it – for the better mostly, and at other times I still battle cynicism. Still your (continuing) story has made my heart ache and eyes tear over your ordeal. The moments of feeling utterly helpless and alone and angry are such a shock to the system. He strengthens us in the most mysterious and unlovely ways.

  22. Thank you for sharing. Continuing to pray and think often, as my mother-heart aches simply imagining your situations each passing day. And I know that the reality of such trials is one of much deeper and heavier physical and emotional burdens than an imagination can depict. Thankful for the Church–local and universal stepping in and helping you carry some of these burdens at this time.

    “Blessed are the poor in spirit, for the kingdom of heaven belongs to them.”

  23. Jo Frackelton (Morgan) says:

    Hi Jo – don’t know if you remember me from my Bordeaux days but just wanted to say how much I like your blog. “Stumbled” on it one day and have been reading it ever since! I’m so sorry to hear about your little girl ( who looks just adorable!) but be assured that I’ll be praying for you all and particularly that she will experience God’s healing and peace in her little life. As prayers are no doubt winging their way from France, they are too from England. Love to you all xx

    • Oh my goodness! This just totally made my day! SO good to hear from you! I’ll email you when I get a chance, but in the mean time just know that I was thrilled to see your name here. :-) Thanks for your prayers.

    • And I am thrilled, too! Have tried to email you several times, but it never goes through. You must come for a visit sometime! Love, Annie

    • And I’m ecstatic!! Joanne!!! I’ll get Johanna to send me your email. I was chatting with Christy (Elmer) Gascho last night, and we decided we needed a reunion in England–soon!! Would love to catch up with you!!!

  24. May the Lord be with you!!!

  25. Paula Anne Résil says:

    We are all praying that you become accustomed to the new normal and that Olivia fully recovers to her beautiful God given personality. It is difficult to watch your child in a severe situation at the hospital we had to when Jake was small asthma was a recurrent nightmare so I know how draining it is on you Johanna so you will be in my prayers constantly for strength and health so you can continue to care for the family.

  26. Sue Hoijer says:

    Johanna, I am praying for continued strength and grace and wisdom for you through the days ahead. May God continue to bring healing to Olivia.

  27. David Keiser says:

    Praying for you, Brian, and Olivia, that God would strengthen you, bless you, and restore Olivia.

  28. Oh, Johanna! I finally got to read this from start to finish. Crying and praying right now just as I have been with the various FB updates from you and Donna! I can only begin to imagine the daily struggles you face–inward and outward. So thankful our loving Father cares and controls! Praying for the grace of God that you are able to keep your mind stayed on Him and truly know His perfect peace–moment by moment. And for Olivia’s continued improvement and timely full recovery.

  29. Laura Gaunnac says:

    Hi, Johanna, I learned about this situation from my daughter Elsbeth Rodgers. Because she and Jeremy are close friends with you and Brian, she asked me to remember your family in my prayers. I am so very sorry to hear of this traumatic and exhausting new way of life you are experiencing. Olivia is a precious little girl. I will be bringing her and all of you before the throne of our loving Lord.

Trackbacks

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