So I would classify week 4 in one word… nausea. Its like being about 8 weeks pregnant (which I am definitely NOT btw…) and being SO nauseated that you PRAY to throw up and you just can’t because you know if you could just vomit you would feel better. Unfortunately enough for me a long term side effect of Chiari having been present as a congenital deformity is that I have absolutely NO gag reflex at all. Nurses have commented, all my life, how I can take a strep test without even flinching so FORCING myself to puke is even out of the question. This coming week will be spent finding ways to relieve the urge to purge. Its awful. Truly. I am NOT a puker. I hate puking. But what I hate WORSE than puking is FEELING like I need to puke. Of COURSE the only thing that makes it feel any better is to lie down but seeing as how I have three kids, a house and a business to run I cannot spend my whole life in bed so that is not and option. I wonder if my neuro is an advocate of Zofran. I will find out on Monday! Either way I have to find some relief soon. My nausea has come with dizziness, sweats, dry mouth… its RIGHTEOUS. So the symptoms are piling up and as of now I cannot honestly tell you whether this crap is my actual brain or the meds. Isn’t THAT messed up? The meds I take to my brain act right is making my brain act wrong… nice.
One positive note is that I have managed to make contact with several other people who are in similar diagnosis “boats” with me. It seems that most favor prolonging surgery as long as they can but I just don’t think that they had the same talk with their neurosurgeon that we did with Ky’s. Neurological function and nerve DAMAGE – when LOST is GONE. Period. You do not get it back. Nerve damage means that the function of the nerves is GONE forever. You can work to strengthen those muscles to help the areas surrounding but you cannot get back what you have lost. If you begin to LOOSE bladder function… it is GONE and it is not coming back. So once you get to the point of function issues it is TOO late then to say “oh NOW lets do surgery” ….. this is the conversation that we had with Kyleigh’s neurosurgeon almost two years ago this November and yet her bladder is STILL a goner. For me I know how important it is to heed the warning signs. I know how much time I do and don’t have. For Ky it was a few months. Granted maybe Ky was born that way, maybe she wasn’t, we try not to live in the maybes because it would drive us nuts but its a possibilty that her spinal cord did damage her bladder to the point of no return and that her nerve damage from her heart surgery continues to injur her bladder, GI system, kidneys, etc. I know its a huge thing to undertake but I also know that if I was willing to put my child through a similar surgery then I am not scared of it. She is my hero and I know she will be cheering me on (as much as a 3 year old can… lol).
Anyway… back to proofing while I am actually able to hold my head upright. God know I may have 5 minutes or 5 hours before the next wave hits.
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