UPDATE: First of all, thank you everyone for all the support over the last few days. It's such a reassuring feeling knowing there's a great support group thinking about you and pulling for you!!
I think I left off that we were headed back to the hospital after E had seizure #3. We sat in the ER for about 5 hours before we were admitted and brought up to our room. E's fever stayed at about 103 the whole time we were in the ER so their biggest concern was that he'd have another seizure from the high temp. Got up to our room just before 11 and E fell asleep almost immediately. I laid down on the couch and at 11:15 he had yet another one. Neurology scheduled us in the morning for an EEG and an MRI and we were told no food/drink after 4am. I think we were able to get 2 hours of sleep before E woke up at 5:30 and just wanted to eat. Occupying a sick and hungry baby was a nightmare until he cried himself to sleep while H and I had to hold him down for the tech put the electrodes on his head for the EEG. They took him down to MRI immediately after that.
They brought E back up at about 2 and I was able to finally feed him. Kid nursed for 40 mins and the ate 6oz in a bottle; hungry much? Took a 3hr afternoon nap and during that time we were told both EEG and MRI were completely normal!! We were discharged and got home about 30 mins ago. We're all really tired and just spent from the past few days chaos. Hopefully tonight will be a good night.
We were told that going forward we will need to be really diligent about keeping his temp down when he's running a fever. He's more susceptible to seizures in the future and we should continue to call neurology when he does have seizures so they can document them in his chart. We were also prescribed something that I can't remember the exact name of (going on little sleep here people) to administer if he were to ever have a seizure lasting over 5 mins. Basically these types of seizures are normal, but E's is a little more complex because of the number that he's had in a short period of time. He should hopefully grow out of it by 5-6 years. But for now there's not much we can do.
Sorry this was long winded. So I'll AW my sleepy brave little guy.
Poor beautiful E and you and your H! I'm so relieved he's home and all tests were normal. Hope he continues to feel better and better and no more seizures. I know too well how scary they are.
So glad the MRI and EEG were normal! This whole situation must have been so stressful on all of you. Hoping that you have a restful and calm night and that these seizures are few and far between in Es future.
Wow, I just read all the updates. You guys must be beyond exhausted. I'm so sorry you have to deal with this but glad the doctors seemed to have some answers for you. Hope you can all get some rest!
I'm so sorry you had to go through all of that! I'm glad to hear everything came back normal and you have a plan if it happens again. Hopefully you have a relaxing weekend and are able to get some rest.
Lots of hugs all around. I'm glad everything is at least stable and the best it can be right now, and that you have a better idea and plan moving forward. Best wishes to you all, and hope you are all able to get some rest soon.
Post by clairencub on Apr 21, 2016 23:23:05 GMT -5
tjanca22 Thank you for the update! I'm so glad that you were discharged and you are at home. I hope you and the family get good rest. Continuing well wishes your way.
Thank you so much for updating us when you must be so tired! Fantastic news that everything was clear. Hope you can all concentrate on resting and on E recovering for a while now!
That sounds like a miserable night, but I'm glad you have answers now. We have lots of kiddos with diastat at my center and we've never had to use it in my six years there, so hopefully that will be true for you as well. Glad everything looks normal and I hope you all can get some rest now.
Post by holliberry28 on Apr 22, 2016 6:53:26 GMT -5
I'm so glad the scans all came back normal. I can't imagine what you've been through the past few days. I hope the seizures are over and E is on his way to feeling well very soon. FX for rest for you all. So many hugs.
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