Here we are...Just playing a waiting game with Seths life 😢 Today he could barely open his eyes...He was pale & tired 💔 His cultures did come back normal though. He was having trouble regulating his body temp again so they ran cultures just incase. Today is really hard for me 😭 Im feeling helpless again. I pray so hard that my baby can keep fighting until they can figure out whats wrong. I just wish things were different for him 😢 I wish I could take this away.... Seth was started on a new med called felbamate a few days ago && tomorrow he is getting an EEG to see if it has helped control his seizures at all. Tomorrow we are also going to pull back his NJ and make it an NG to get him prepared for the insertion of his new g-tube 💔💔💔💔💔💔 words cant even describe the pain Im feeling knowing it has come to this 💔💔💔💔I understand that this is a reversible surgery but the thought of my son possibly never getting to eat again pains my heart in a way I cant even describe 😢😢 Seths neurointensivist stopped me in the hall way yesterday to tell me they started the entire genome process and that the genetic tests that were taken about 6 weeks ago should be back this week... I will keep everyone updated! 💏 If you dont have hope; whats the point in living?
Posted on: Mon, 05 Jan 2015 04:46:13 +0000
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