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.