An update for those of you I have not spoken to..Wednesday was Addleyʻs hospital admission for a sedated EEG and EKG. While she was not a happy baby, sleep deprived and food deprived, she tolerated the procedure well. She didnʻt particularly like having vitals hooked up to her nor the process of the oral sedation, but she doesnʻt know how lucky she was to NOT have to have an IV or general. I am thankful for that. I tolerated the procedure well and only shed a few tears - it really humbled me because there are so many parents that have to deal with medical procedures for their children on a daily basis. I am thankful for my childrenʻs health. Following the procedure we learned that the EKG had not been done and that apparently the neurologistʻs office did not feel it necessary. I was a little skeptical of this since the doctor had told me otherwise at our previous appointment. Following the EEG it took a little bit of time for her to "wake up" but she was able to stomach some apple juice and consequently they sent us home. I was surprised at how unstable she was the remainder of the day. It was like her brain was awake telling her to do all her normal activities but her body was non compliant. I suppose it was equivalent to being drunk. Funny to watch, but a little exhausting to care for. We monitored her for 24hrs and of course by Thursday morning she was back to her old self.
On Thursday our pediatrician phoned to give us some preliminary results of the testing. (Thank God because I wasnʻt prepared to wait for our follow up appointment with the neurologist September 8th). Everything looked normal on the EEG. Yay! This wasnʻt really a surprise since the neurologist had said she was pretty sure it would come back normal. And while this doesnʻt 100% rule out a seizure disorder, it makes it highly unlikely. Good news. I canʻt say I feel as though a weight has been lifted off of my shoulders because I still donʻt have any answers. The pediatricianʻs opinion was that the neurologist would likely tell us to continue to monitor her episodes to see if they changed in frequency or intensity. *sigh*
Thursday evening the neurologist called (I was shocked) to also tell me the preliminary results. I asked a few questions and we talked about what the next step would be. As suspected, the EKG was supposed to have been done and she has no idea who at the office would have indicated otherwise. She hinted that perhaps the hospital was just being lazy and nobody actually called to verify. I am aggravated at the communication mishap and wish that people would just do things right the first time. Anyhow, we are now being referred to a pediatric cardiologist so that they can perform the EKG and do an echo (ultrasound) of her heart. The reasoning behind this, is to rule out any possible cardiac arrhythmia's that may be predisposing Addley to having seizures when she breath holds. If her blood pressure suddenly drops due to a sensitive vagus response; this could trigger a seizure. Additionally, the neurologist mentioned that it is important to determine since it would be much more serious to overlook a heart problem than it is for a child to have continued seizures. It sounds as though the procedure is actually quite quick and non-invasive and can be done in their office but I am just so aggravated that this all could have been done at one time while she was sedated and oblivious. I mean, it isnʻt as though she is going to complacently lie on an exam table and allow them to ultrasound her heart! In the mean time, we just monitor. We have her 12 month shots in 2 weeks and I am pretty sure the unexpected pain from that will trigger her to breath hold and seize so I will keep you updated on that. In the mean time, I do my best to prevent injuries that most toddlers are prone to...a hard feat with my little daredevil. This morning I caught her standing on Dayton's back while he was lying on the floor. The travertine floor of course! Thank you for all of your calls, emails and texts. Your support and concern has been greatly appreciated.
