Zane is spending another night at the hospital. He started the day with some vomiting and diarrhea. They gave him something for the nausea and he hasn't vomited since. He has been eating well all day. He hasn't had anymore diarrhea this afternoon and he has been drinking water and peeing so hopefully we don't have to worry about dehydration. He is still having a hard time spitting out sentences and is unsteady on his feet. Unfortunately we learned from Dr. Crisp today that most likely it is the seizures causing those problems and not the drugs. He does believe it is reversible, though. We are expecting Zane to be released tomorrow.
I got smart and bought a digital voice recorder today on my way to the hospital. We used it during our discussion with the doctor today because I had about 15 questions for him and it's hard for Abe and I to remember everything because it is all so new to us and most of it's over our heads. We should be able to just plug it into our computer and download the recording onto our hard drive. We'll use it at appointments from here on out. Hopefully it will help us keep everything straight.
I got smart and bought a digital voice recorder today on my way to the hospital. We used it during our discussion with the doctor today because I had about 15 questions for him and it's hard for Abe and I to remember everything because it is all so new to us and most of it's over our heads. We should be able to just plug it into our computer and download the recording onto our hard drive. We'll use it at appointments from here on out. Hopefully it will help us keep everything straight.
I know there is a lot more I could say right now, but I'm exhausted once again. I've been on the phone most of the evening and done a lot of crying. I know it's okay to let those emotions out while Zane is not around, but I'm done with it. No more crying....at least for the rest of the night!
3 comments:
This sucks, thats really all there is to say about it. I don't know the right words to make you feel better, but I do know that all of you are strong and will find a way through. Just know I have been thinking of you and Zane all day and will continue to do so (even if I am few on words). Love You!
The essay from Charlie Foundation about Ketogenic Diet was most reassuring and informative. That may be the solution to all Zane has been experiencing. Perhaps the various meds are creating unnecessary havoc on his little body as they build up inside him - just a gut feeling for after all I am not a doctor. Yes, you are exhausted and beat - plus you are a nursing mother which takes its toll on your own body. I know it is hard for you, Abe, and extended family/friends to see this precious little guy so miserable and in a hospital again. I do not mean to question the professional help being given - just remember to take everything with a grain of salt. It is going to have to be you folks who ultimately make decisions about treatment. Zane is still too little to communicate accurately what is going on in his body. You are intelligent and will mull things over in your head to come up with a good plan for Zane. Reread your updates from when this first began. Search for any clues you can put together and then proceed with a plan that seems reasonable. It is good to ask questions to the doctor like "if we refuse certain medications do you know what the ramnifications would be?" I am praying that you will hold up over all this and that a brighter day will soon bloom with this little guy. I also pray a happy medium will be found to help return life to somewhat normal. Stay strong, get your rest, believe in yourselves that a solution is out there somewhere. God Bless......... mb from tc
Hang in there. We love you guys!
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