So our day today was really not something we saw coming. Poppy was up for parts of last night vomiting. She’d had about 10 days of not vomiting at night, so this kind of caught us off guard, but was not alarming. But it was different…usually when she vomits, she coughs and that cough usually gives us time to jump out of bed, run into her room, sit her up and catch her vomit. Last night, we heard a cry and found her face covered in vomit. We did a midnight bath and didn’t think too much of it, because she’s done it before, even though it was weird she didn’t warn us. She proceeded to heave and retch in her sleep throughout the night. At 3:30 she had finally had enough volume for me to feel ok about turning her feeds off, hoping we could all get some rest before getting up again at 5:30 to give her meds.
At 5:30 I show up to give her meds. I just knew…something was wrong. She’s laying there, eyes wide open, breathing super shallow and fast….she’s unresponsive…a rag doll. I call Brad in to see what he thinks. In the meantime I take her vitals and check her O2. O2 90% heart rate was elevated around 145- I immediately started thinking…’oh no, I wonder if she aspirated earlier in the night, and now she’s drowning on us.’ I remember reading those tragic articles of the kids who take on too much water at swimming lessons, are fine when they go to bed, and end up drowning in their sleep. I immediately called her peds office and we prepared to race to Bozeman ER. I checked her head circumference trying to see if it was growing ( shunt failure?), her pupils were reactive but we could not get her to track or hold her head up. I don’t think we’ve ever been so scared of losing her….right before our eyes, on our watch….of all the things she’s been through, to lose her to something so mysterious and out of the blue…it was awful…we were hysterical. I cry my fair share, but since she was born, through all of it, I can count on one hand the number of times I couldn’t hold my tears back in front of people…today was one of them. We seriously thought she was going to die on us.
Just as we got into Bozeman, at about 6:15, she started breaking through and moving her limbs a little and finally crying. It was like she had been stuck 😞 She was finally able to break through… oh it’s so hard to watch 😞 we’ve never felt so helpless… Praise God she broke through!!
Her teams in Seattle were notified and consulted. She got a slew of tests: blood work, head CT, chest and shunt series x-Ray, and finally an EEG. We were sure it was a shunt failure, the way she’d been retching and vomiting in her sleep, the way her eyes got stuck, just everything, but neurosurgery met and really liked how her head CT looked. Blessed news. Thank you Jesus!! Amazing news, on many fronts. But then what happened?
Poppy’s neurologist was consulted, and so far the consensus is that she had a seizure. At least a 45 minute long one at that. They got the EEG and so far, at least at the time of the EEG, she was having no active seizures. Again, amazing news….but then what happened? What do we do now? I have many questions for him. He’s out at Seattle Children’s, but I’m hoping once he is able to read the EEG himself, we can talk and get some answers. We would love prayer for that. At times it can be challenging to talk to neurologists. You really have to ask the exact right question to get any kind of detailed answer. It’s no ones fault, it just seems to be a neurologist thing. If you could describe in one word. Vague. Pray that I ask my questions in a way that yields good answers. Thank you. We so appreciate your prayers and concern.
So here is the current: It still could have likely been a seizure, and that’s what we’re going with until something else tells us otherwise. For now, we are spending the night in the ICU for monitoring. She’s also requiring a small amount of oxygen. She is on full cardiac monitors, which is always a comfort to me. Can’t help it. Now just pray I don’t stay up all night watching the monitors lol. She does seem better. Besides sleeping the day away (which I hear is very common after a huge seizure), we actually got some smiles this evening. Sooo encouraging!!! Thank you Lord, we sure needed that.
Praying that tomorrow brings some kind of explanation and game plan, should this ever happen again. Lord you have this. Lord I pray for peace. Lord I pray for my babies 😞 May they know and feel how much they are loved, especially on hard days such as these. ❤️
‘Be joyful in hope, patient in affliction, faithful in prayer.’ Romans 12:12