We interrupt this calm to bring you the storm… That’s the story of our week. Life has been “normal.” Raegan has been in school, doing great, and I’ve been home with the two little girls. Maddie has been breezing through homeschool, and Harper has been a typical toddler, growing and exploring and testing her limits. We had broken away from that life of doctors and therapy and medications and fallen into a comfortable, happy place. And Tuesday night that was all brought to a screeching halt. We had a great day, a calm evening, and got all the girls settled into bed with no trouble. In fact, I was celebrating because Harper had gone down so easily- she had gotten to be a bit of a handful at bedtime in the past week and wasn’t sleeping as well, so I was excited that she was so easily settled. Then, as I was relaxing and getting ready for bed, I heard a sound through the baby monitor that made me pause. I thought Harper was playing with something as I heard this rhythmic tapping sound, and I hesitated to go into her room- I was worried that if she was awake and saw me she would start crying and not go to sleep (hopefully other moms can understand my dilemma!). But I knew I couldn’t relax until I saw that she was definitely okay, so I opened her door.
Long story short, she was not okay. She had vomited in her crib and was face down in it, seizing. Initially we thought she was choking, but her seizure was interfering with her breathing. I called 9-1-1, and somehow the operator was able to make some sense of my hysterics, and the paramedics arrived within ten minutes. The gentleman ran in, immediately snatched Harper up, and ran her out to the ambulance.
By the time we reached the hospital they had managed to stop the seizure, but she had suffered through it for about 40 minutes and was struggling to breathe on her own. Once she was stabilized in the trauma room, they transported her to a c/t scan, and then we were put in a holding room in the ER as we waited for an actual room to open up in the children’s hospital. However, the doctors decided to consult with her medical team at Duke, and it was decided that she should be airlifted to them. When the flight team arrived to transport her to the helicopter, she was awake, and was not at all excited to be strapped to a stretcher and taken away from her mommy and daddy. (And we were not happy to let her go, either!) They did allow us to walk out to the pad with her, and to tell her goodbye in the helicopter before they took off. As soon as she was secure, we hit the road for Duke.
Harper arrived at Duke around 3:15 a.m., and we arrived just after 5:00 a.m. The neurosurgeons looked at her c/t scan and gave us the all clear from their standpoint- her cysts have not grown any, no further fluid accumulation, and everything looks stable still. After several hours we were admitted to a room on the pediatric floor, and there we met with a pediatric team and a neurology team. The final verdict was that there really was nothing to do- this was a result of what we already knew. Harper’s brain is abnormal and she still has porencephalic cysts, and she is a high risk for seizures. We have been blessed to have a nice, calm, “normal” past year with her, but this was a wake-up call to the reality of her condition…. that there are lots of unknowns and no one can predict what she will do.
The official primary diagnosis we received for Harper is “status epilepticus.” That’s just a way of saying life-threatening seizures that last longer than 30 minutes and can be difficult to stop. She has earned long-term anti-seizure medication now, which we are working on. It makes her irritable and sleepy, and she takes it twice a day, so our girl is not quite the same as she was before. However, we are hoping that once her body adapts to being back on medication she will return to her happy, cheerful self. We were also told that simple things like the common cold and viruses increase the likelihood of having these seizures, so we are learning to be more cautious about germ exposure! It is a lot to take in… We have emergency meds to carry with us at all times in the event of a seizure, and we are on pins and needles now, just waiting to see if it happens again. For now, she doesn’t leave Mommy’s sight! We have a lot to learn about prevention and awareness and how to respond, as well as options for monitoring her, particularly during the night hours. Of course, we are all praying that we don’t have to experience this again, that the meds will keep things under control and that we can eventually relax a little and feel confident that she isn’t in danger. It’s a scary road to walk as a parent… This is my daughter, the one we have prayed for and fought for, and the image of how I found her the other night haunts me. I have been shaken to the core, but I am constantly reminded that God always keeps His promises, and ultimately she is His. He has not brought us this far to leave us!
“No one will be able to stand against you all the days of your life. As I was with Moses, so I will be with you; I will never leave you nor forsake you.”
Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”
Surely he will save you from the fowler’s snare and from the deadly pestilence. He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday. A thousand may fall at your side, ten thousand at your right hand, but it will not come near you. You will only observe with your eyes and see the punishment of the wicked.
If you say, “The Lord is my refuge,” and you make the Most High your dwelling, no harm will overtake you, no disaster will come near your tent. For he will command his angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone. You will tread on the lion and the cobra; you will trample the great lion and the serpent.
“Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name. He will call on me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life I will satisfy him and show him my salvation.”