This past week, Baby Richi and I spent 24 hours in the our local Children’s Hospital – Healthpark/Golisano for an overnight EEG to get a better look into the convulsions/facial spasms he has been experiencing since he was born. They have been getting increasingly worse, and more frequent.
It was incredibly difficult to say the least. It was so hard having to watch him, yet again, be held down, have these electrodes applied to his little head, and be taped up like this with the netting. The tech said it wouldn’t hurt him to apply the electrodes, but I beg to differ. He screamed so hard I thought he was going to pass out. I thought maybe it was just because he was annoyed and over being held down yet again, but when the electrodes were removed the following day, I realized it was because he was actually hurting and in pain that he was screaming.
As you can see in this picture, which was from the following morning, he has bruising all over his head. Not just on his forehead, but all over his entire head. This made me so incredibly sad and hurt my heart so much!
On the plus side, when we saw his Neurologist who showed up at the hospital bright and early, she said after a quick scan of the EEG she didn’t see any abnormalities whether he was asleep, awake, or otherwise – so this was a fantastic sign. It doesn’t mean that he isn’t epileptic, but that his chances of not being are good. She is going to review the EEG thoroughly and we will be going over that on November 17th when he has his follow up appointment. I will be so thankful to get to the bottom of this at least, while we wait to see or figure out what exactly is going on with his lymph nodes.
I found another swollen node in his neck in a different location yesterday. Not sure if it’s attributed to the EEG placement, or if there’s something going on that correlates with the swollen lymph nodes we are already dealing with – but something is definitely going on there. We, still, have yet to have blood work done. *Sigh* I am sick and tired of playing a waiting game with this doctor of his. If, when we return for his 9 month checkup this month, the nodes still haven’t gone down, and the doctor decides against the blood work even still, I will be finding a new pediatrician. Regardless of the fact that my children have gone to him for the past 10 years, I don’t appreciate the game playing or the waiting around. I am a very pro-active mama and I want to do something about whatever this is that’s going on right now. I don’t want to play ‘wait and see’. I want to know now.
Aside from this overnight stay, he has had a feeding study done this week, and was supposed to have an aspiration study done as well this week – that I showed up to, at the same hospital, an hour away from my house, mind you – only for me to find out the appointment was cancelled as the speech therapist he saw for the feed study didn’t see any reason why he should have the other study done. Well, it would have been fantastic if somebody would have told me this, so I wouldn’t have wasted time and money – but whatever. It’s over with now. I have also seen two doctors for him this week as well.
I feel like it’s one thing after another.
I opeted to go ahead and get him the flu shot this coming Tuesday, after a lot of thought. I’d rather that, than have him end up with the flu in the ICU.
I hope everyone is having an amazing day! xo