I suppose 7 full weeks is a long enough break from hospital admission. We were discharged home at the end of June. Alexis has been doing very well, an apnea episode (blue spell) here and there but overall she has been progressing. Our biggest battle has been the struggle of learning how to take a bottle. There were good days and there were bad days. There were times she would take that bottle as if she'd been doing it her whole life, then there were days (at times, weeks) that she was like "get this thing out of my mouth now, or I'm going to hold my breath!". A real wishy-washy little girl, it is her way, or no way.
Tuesday afternoon, I laid her down to tube feed her. Then it happened; another horrific event to add to my memory bank. Her eyes rolled into the back of her head and her head was shaking, then the tremors quickly went from her head to her arms. It lasted all of 15-20 seconds and then she turned blue and began to choke. I turned her over and hit her on the back...the typical "save-all" for her frequent blue spells. Once she started breathing again, I hooked her up to the pulse ox to check her oxygen levels and she was satting at 86% and her heart rate was 203bpm. I was prepared with her oxygen but I gave her a bit of time and she brought herself back up to 95-98%. At that point I got the kids dressed, made a few phone calls and loaded them up, rushing to the ER.
We were admitted last night and today we made 2 unsuccessful attempts at an MRI without anesthesia. Tomorrow, with an anesthesiologist team bedside, Alexis will undergo complete sedation for her MRI. The neurologist needs to get a better look at the brain hemorrhage she has, to see if that is what's causing the seizures. We are wondering if her apnea spells have caused the apnea, or if the apnea caused the seizure. Or if perhaps it has something to do with her g-tube and her feeding. Just a lot of questions right now and we are looking for answers.
I hope to update again tomorrow with good news!
Praying for little Lexi!
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