August 15, 2008 - Friday
Update
So Justin was really sick this weekend. He had a really bad case of croup...we were in the ER all night Sunday night because he was hallucinating and having a really, really hard time breathing. Jesse and I got little to no sleep this weekend.He was finally feeling better Tuesday. He ate breakfast, ate lunch and then laid down for a nap. I thought I would go lay down, too because let's face it, I'm utterly exhausted (likely even an understatement). I was walking into the bedroom and I heard him moaning. I went in there and he was face down on his bed, flailing around. I picked him up and his face was solid white and lips were blue. He was flopping aroundin my arms, his jaw clenched. My first thought was that he choked on something so I pried his jaw open and did a scoop at the back of his mouth. His jaw clamped back down so hard that it drew blood. There was nothing in his throat so I hurried up and called 911. The first dispatcher I reached was from a neighboring town. Anyway, J didn't breathe at all the whole time I talked to the first operator. I then got transferred to the right dispatcher. He came to momentarily while I talked to her. His eyes kept rolling back and he was going in and out of conscienceness. It was awful. Absolutely horrible. They got the ambulance en route...then the guys couldn't find our condo. So I stood out in the hallway and waved them down. They checked all his vitals (literally like, 9 guys...they were so great!) and told me that he needed to go get checked out either via ambulance or car and that it was up to me. I told them he had a pediatrician appointment @ 4:30 and they suggested I call his doctor and see about moving it up. So I called his doctor and they told me to bring him on in. They told me that if, at anytime en route to his office, I needed to stop at the ER to do so.So I took him in and pediatrician confirmed that, yes it was a seizure...but they didn't know why. We went in for a CT scan and that came back fine. He mentioned doing an EEG but said it was up to us. He stressed to us that 5% of children have at least one seizure in their lives and 60% of that 5% never have another one again so he wasn't all that worried about the potential of another one.The medics said something about a febral seizure but J rarely, if ever runs fever. His temp when they came to the house was 95.5 and even this weekend when he was hallucinating, he didn't have fever. He had another seizure at 9 that night. We were in the ER from around 9:15 until 5:15 Wednesday morning. They are keeping him on phenobarbatol. The meds knock him out cold. They are a seizure medicine but they also serve as a sedative for infants/toddlers going into surgery, etc. So basically they are keeping my son unconscious until they can figure things out! I just...it is awful. Absolutely awful. They did a whole bunch of bloodwork at the to make sure it wasn't anything to do with the croup or the meds/steroids they had him on. They ruled all of that out which scares me even more. The ER doctor got on the phone with the pediatric neurologist and she said that she needed to see him ASAP, this week. We actually had our appointment this morning. She gave him a preliminary diagnosis of epilepsy. She wants to go ahead and do an MRI and an EEG, more bloodwork and potentially a few other tests depending on how that goes. She has also referred him to a pediatric cardiologist because she wants to rule out early that it has anything to do with his heart. She said that epilepsy was typically diagnosed between 2-15 yoa. J is only a year and a half so they are really stumped on this. She is continuing him on the phenobarb and started him on another seizure medication. Basically, they are keeping him drugged up to where he is either sleeping or so dizzy he can barely even SIT up on his own, standing is out of the question.These meds, like I said, make him extremely dizzy. He's tired of being held, he doesn't understand why he can't get up and play like he normally does. He's just...he's so upset. He's crying non stop, banging his head, kicking, hitting. He's just so confused and our stress levels are way through the roof. Apparently the extreme dizziness can last up to three weeks while the meds work their way into his system. He will be on the second medication for two years (unless it is something with his heart). If, after two years he has no seizures at all, they will take him off the medication and see how he does.Anyway, as most of you know...we are five states away from our families. My mom flew in for a couple of days, but she has to go back to work on Monday, so she is flying out on Saturday. Justin can't do anything AT ALL for himself. He can't even sit up for himself at this point. He is wearing winter clothes because he stays so cold and his little lips are blue, he is stumbling all over everything...and I'm not used to this. I'm so afraid that this will break me. Please pray for our little family. Pray for us to get through this. I know it could be worse....but I'm afraid it could be a lot better, too.
No comments:
Post a Comment