I am writing this post in retrospect (on Feb 15, 2012). It was one crazy day (as were TOO MANY of our days in that season)... I'm not sure I can remember it perfectly but bear with me... I couldn't bear to write about any of this at the time. It was much too traumatic... living it once was more than enough.
Thurs, Feb 10: We are at home making Valentines cards for his classmates and Peter has a major grand mal seizure. His first non-febrile one. I am scared shit-less (I was already on edge from his recent health problems). I try to call Mike from my phone that was on the table near me. I can not work my fingers. I try to call 911 and I can not work my fingers. I scoop up my 42 lb boy like a baby and run out of the house. It was all I could think... "Get out of the house!"... someone will be able to help me somewhere outside, even if its someone driving down the street. But I run to my next door neighbor, Carolyn's house (I've told Lily to stay inside our house) and BANG on her door while SHOUTING her name and carrying my seizing child. Thankfully, she is on the phone so she doesn't have to find it to call 911 for me. I sit on her couch and start shouting prayers for the Lord to make it stop. All the while, he continues on. Then Carolyn passes me the phone to talk to the dispatcher. She asks me to the most ridiculous questions. Mind you, this is now his 8th seizure. We have done this before. If there was something else I could do, I would be doing it. I'm pretty sure I shout at the dispatcher and throw the phone. Peter is still seizing. Then I hear a siren (we hear them often b/c we live by a rescue station and hospital). It takes a few seconds for it to register that its FOR PETER! So I stand up and RUN, holding my seizing child. I'm sure I'm hysterical. About that point, I think Peter stops seizing (its always been somewhat vague to me to pinpoint the end of a seizure b/c they are so out of it in the post-ictal stage) and goes limp. To me, it feels like he has been seizing so long that he maybe dies when he goes limp in my arms. And I feel the presence of the Lord surround me like I can't explain. And somehow, probably only by the power of the Holy Spirit, I say "OK, Lord" in my heart. And I thank Him for the 2 weeks we've just had with Peter since his non-febrile (myoclonic) seizures began. Then I had him to the paramedic and tell him that he is limp and maybe not breathing. The paramedic takes him and assures me that he is OK. (And I believe him... I trust that maybe he really is breathing and just done seizing.) We go to the hospital, they talk with a neurologist from his VCU practice and we increase his medication dosage. We go home. I am majorly traumatized to say the least.
Peter continues to have the myoclonic jerk seizures on Friday. Mike comes home from work early to take him to the VCU ER on Friday. If I remember right, that visit was pointless. They just told us they'd schedule an admission for him to the Epilepsy Monitoring Unit in the near future.
Sunday, Feb 13th: (3 days later)
At bedtime, Peter runs across his bed and falls to the floor, breaking his arm. We feel pretty sure right away that its broken b/c it swells SO quickly and he is just inconsolable from the pain, which is just not like him. He tends to be pretty pain tolerant. We go into the ER again and confirm that its broken. Mike and I look at each other and say, "well, sh*t" (a funny story from our STINT year). They splint it and tell us to head in to the orthopedist's office later that week (I think we get an appt for Thurs). Peter continues in such pain (remember, he is SO pain tolerant AND he has just been diagnosed with a seizure disorder and stress, lack of sleep are seizure triggers. So this is NOT jiving with me, at all.) Thankfully, a mom from my Wellspring group tells me that after a bone gets casted, the pain improves significantly. So I call the ortho office again and they agree to to see us on Tuesday, Feb 15th.
Tues, Feb 15th: This day was also significant b/c its the day of his first follow up office visit since his seizures began 2 weeks earlier. We are getting results from his expanded newborn screening, which will let us know if he has some sort of metabolic disease. We have been waiting a long 2 weeks for those results. His appt is at 12:30 (his normal naptime, so not ideal). We find out that screening was NORMAL! Thank you, Lord! After that appointment, I take him over to West End Orthopedics for what we think is his casting. They X-Ray his arm again. The doctor comes in and asks me what Peter was doing/ how he broke his arm. Then he tells me that he is going to have to take him to the OR. WHAT?! I take a deep breath. He says he can fit him in in the morning. Great! Let's just get it done. The nurse comes in to "pre-op" screen him and takes his temp. Its like 99.9.... well, look at that, he has a FEVER... they can't take him to the OR. He has to go see his pediatrician. Great. This is the point at which I about lost it! Peter was not sick. I still to this day don't think he was sick. He never had any other symptoms... only all of the craziness he'd just been through in the last 3 weeks. So we head over the peds office for a dinner time appt. At this point, Peter has missed his nap and been at doctor's appts all day instead. They see him and his temp is like 100.5. So they don't clear him for surgery. Instead, we go home and wait some more, still in pain.
Finally, they took him to surgery on Friday, Feb 18th for an Closed Reduction and Internal Fixation of his left humerus. He came out with a bright yellow cast that was quite the excitement! We would later find out that was also the day our baby died. I was pregnant and found out at my 8 week ultrasound that the baby had grown to 6 weeks and 4 days. It was easy to focus on Peter though that and just be happy that it wasn't something else going on with him. Sadness over Peter felt and feels more justifiable and easier for hide behind. But its a loss. I try to trust God's mercy but I often feel like our family is different b/c of that season. Earth holds a lot I love but Heaven holds someone too. She says it really well.
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