It has been a very long day and there will be a few more to come. We arrived for Laura's appointment today for more tests and what we thought was going to be a treatment plan, instead she was hospitalized because we found out some of the more recent tests were a false positive, after further testing today it was found that she has antibodies attacking not only her pancreas, but also her liver and kidney's. Because of the abnormally high antibody count they felt hospitalizing her was our best option at this time to try once again to figure out why her auto-immune system is doing this. Normally there are 3 main things that auto-immune cause or affect…thyroid, pancreas and gluten tolerance. Sometimes it affects only 1 sometimes more which is called a cluster effect. However, with Laura they have found other organs are being affected as well and that isn't good. She had previously been tested for tumors after her Thyroid stopped working, the pituitary gland in the brain was swollen but showed no signs of a tumor at that time. More recent blood tests revealed she has Hemochromatosis which they then thought caused bronze diabetes or diabetes incipidus, however, tests today showed normal iron levels as apposed to the last test that showed abnormally high levels of iron…they liken this to an electric current that is bouncing around inside a container of newspaper, it strikes long enough to leave a trace or marker that it was there but then moves on to another spot so quickly it cannot be pinpointed. Tomorrow will be a series of CT scans, MRI's, EEG, EKG, another blood antibody test, a vitamin D test, cholesterol tests and a few I can't remember right now to be compared to other recent tests.
Dean went home and gathered things for us to be here for awhile and I insisted he bring my laptop, thank God I can get a pretty decent signal. I'm going nuts here, there are no answers only more questions, we have had a nephrologist (Kidney)in to see her, the ped endo(her endo), a neurologist(brain), a gastroenterologist( liver, intestine and such), a cardiologist (heart)and an oncologist( cancer). I don't mind telling you that last one scares me the most, its precautionary right now they keep saying but why bring them in if they don't suspect it? Right now Dean is on the bed with her both napping, I can't even think about sleep at this time and don't care to anyway. She looks so helpless laying there with tubes and wires going in every direction, she's scared and I can't answer her constant "Why" questions anymore, I have no answers and neither does anyone else. Her brother is staying with neighbors because he didn't want to see his sister like this and that's probably for the best right now. Dean is withdrawn and like a sponge just soaking it up but not letting anything out (typical for him in stressful situations) but irritating to me, I feel alone and coming to this site and letting it out felt like a good option for me right now. All of our family (his and mine) are more than 1000miles away, I've asked them not to rush out here because we really don't know anything and I don't see the point in wasting money on a trip that may not be necessary at this time.
I have questioned the doctor's time and again if they could have something to do with the fact that she absorbed her twin in the womb and all I get for answers is…we need to run more tests to determine a cause or rule them out. Yea, big surprise there. I want them to find a cause of course but at times I feel like I'm just getting the run around and that they know, or suspect something but just won't tell me, paranoid maybe but this is my baby lying here and I feel so damn helpless I want to scream. I've prayed to God, I've cursed God, I've given up on God in a vicious circle over and over I just want answers and I'm not patient about it though I know I should be, let them do their jobs, but instead they stand around out in the hall discussing her over and over and don't tell me squat. She seems so healthy, how can this be happening to a child that seems like a normal 7yr old active girl, now she is lying there all tangled in this crap and scared and I can't undo it for her. They sedated her earlier because she was so scared and tried to fight them off when they kept poking her with IV needles and missing the veins, she tried to tell them where her blood is always drawn from but they wouldn't listen which pissed me off and I laid into them telling them if they would just listen to her they wouldn't have a problem hitting a vein…no big surprise they finally used the backs of both her hands just like she told them to do in the first place, assholes. I'm sorry for the language and if I get banned from the site for it so be it, I'm mad as hell and that's just how it is.
I was thinking earlier, a year ago she was just a normal little 6yr old girl with the whole world in front of her and in the last 6 months or so its like a totally different child, so many rules about what she can and can't have, how she has to eat the meds she has to take, and I keep wanting to know why her? Not that I would wish any child to be put through this but what did she do to deserve this? Is it my fault for having her knowing there were medical problems in the family? I tell myself no but it still creeps into the back of my mind.
Basically, I'm asking for your prayers for our daughter, that they find out why this is all happening to her and find a way to stop it or treat it or get rid of it or whatever needs to be done. I'm not an extremely religious person, I do believe in God for the most part, but I don't know what else to do but pray.
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