Friday, December 5, 2014
Sleep is overrated
Sleep? SLEEP?!? What's that? If Jacob could talk, these would be his words. He has had a very bad week unfortunately. The screaming has dramatically increased and the sleep has overwhelmingly decreased. It is hard to watch Jacob in so much discomfort, so much irritation. We called twice to the neurologist to address this only to be left with no call back. Frustrating to say the least. Along with the crying, he has began to cough/choke on a regular basis throughout the day and night. There have been several nights this week he has been up for 3-4 hours just coughing so hard that his overnight bottle became a canvas painting all over our clothes and him. Jacob also is eating much less this week. He is getting back into the habit of showing signs that he is hungry, but unwilling to drink his bottle. We are just at a loss for what to do. It has been tiring and stressful, especially when you try to call for help with no answers in return. The one plus at least to this week is that Jacob's one hour EEG he had yesterday came back normal. So as of now, he is probably in the clear still for no seizures! You get the good with the bad I guess.
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Oh Michelle my heart breaks for you right now, I know you frustration and pain. I will give you sugestions from time to time which have worked for me over the yrs. I know each and every special child is different. You can tell me to stop at any time lol I wont be offended. #1. Be that pain in the azz mom, call the office 100 times if you need to, it's the squeaky wheel that gets attention, though always do to politely. #2. 1hr EEG's almost always come back normal. If you are suspecting seizures get a 48hr or 72hr. They even have a video one that they do in the hospital so they can see what is happening during abnormal brain activity. It's not fun, but you do get a better picture on what is happening in that precious brain of his. I wish I could reach right through the computer and give you a Big Hug Sweetie. Hang in there <3
ReplyDeleteThanks Aunt Gloria! Yes, I actually did call several times. And I think the message got through to the boss at some point that they were not calling back. A couple days later several people called apologizing for not getting back. Probably called because they heard Jacob ended up in the ER! And yes, we are aware that 1 hours do not show the whole picture. I think 1 hours are kind of pointless. We did a 24 hour a few months ago and hoping we don't have to do that any time in the near future. Was not fun! And feel free to comment away.. I don't mind it :)
ReplyDeleteI'm so glad your right on top of everything Michelle, you have to be. You remind me of myself :) It's not something I wanted anyone else in the family to experience.
ReplyDeleteThink of you always <3