What a woldwind of a day yesterday, so at about 5 or so the head nurse came in to tell me the neurologist had just called and said that aiden had in fact had a seuzure durring his eeg. Thisg was apsoluitly devastating news and I just lost it... This of corse changes the plan for going home, they upped his dose of one of his seizure meds and then tested his blood for the other level. Then when mike came up he witinessed another seuzure. To finkd out hisb level of the, one meds were low wich could explain why he started having seuzures again., one one hamnd im glad this happened while we were still here but,am devestated it prolongs our time here.
With everything that happened yesterday I had finally hit my emoitional limit, and as guilty and horrible as it was i had to leave and go home for a couple hours. Iti was apsolutly the hardest thing ever, and ofb corse im crying, soph is crying, mia crying and mike is ready to kill someone , but we made it home and u got to repack my bag, take a shower in my own shower and sleep in my own bed for just a couple hours before I hafta get up and take mike to work, but it was a good mental break from the hospital and im feeling a little relief today.
So they have upped both doses of his meds and happily they havent seemed to affect him too terribly, ad the lne med can knock him out and I was afraid we would have to go back to the feeding tube. So thats a plus! Ive gone to mostly pumping and bottle feeding him so I can show his intake in numbers and not hafta worry that that one key could stall us from coming home. So the dr has set up an apt for us to sit down and talk to the neurologist this evening so we can get a better idea what their requirements are for usb going home.
With everything that happened yesterday I had finally hit my emoitional limit, and as guilty and horrible as it was i had to leave and go home for a couple hours. Iti was apsolutly the hardest thing ever, and ofb corse im crying, soph is crying, mia crying and mike is ready to kill someone , but we made it home and u got to repack my bag, take a shower in my own shower and sleep in my own bed for just a couple hours before I hafta get up and take mike to work, but it was a good mental break from the hospital and im feeling a little relief today.
So they have upped both doses of his meds and happily they havent seemed to affect him too terribly, ad the lne med can knock him out and I was afraid we would have to go back to the feeding tube. So thats a plus! Ive gone to mostly pumping and bottle feeding him so I can show his intake in numbers and not hafta worry that that one key could stall us from coming home. So the dr has set up an apt for us to sit down and talk to the neurologist this evening so we can get a better idea what their requirements are for usb going home.
I just got all caught up on your blog...I'm so sorry sister. I'm thinking about you guys like crazy and keeping you in my thoughts. I know that you are probably having a hell of a time being away from your family and living in a recliner...but your a good momma and wouldnt leave your lil man hangin...I think thats amazing...I can come stay with him for a couple hours one night if you want to go home. :) you say the word and I'll be there. Love you sister.
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