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realisticdreams
member
And then I cried.
realisticdreams
member
Who knew after the crappy 2 weeks we've had that my breaking point, would be a urinalysis. I dont' even think I have the energy in me to recap the last week but it was awful. This week I found out I have to start remicade infusions, and see a rehumatologist for ME, P & I waited 3 hours to see an ENT about her lip tie and he said he had never done one..and proceeded to get an ipad out to look at the surgery. No thanks!
I randomly called endo because she was scheduled in May to see if we could see a resident and the dept head had an opening yesterday! Just in time because her urinalysis came back with an insanely low specific gravity. So we had to do more UA, and labs, when they took us to the lab room, she legit bolted out the door, with no shoes and no coat. 4 is proving to be very unreasonable for medical treatment!!
So we have to see nephrology too because they dont' think her kidneys are working properly, want us to take some bladder meds and start cathing again but everyone knows that's semi-unrealistic, and the last weird piece of this puzzle is some labs she had done in October..a testosterone level of 40. The endo was like this can't be right, why did they order it? I had no clue, he said the lab values are for an adult, and so the results werent' flagged. (How many drs have looked at these results you ask..hmm maybe 6 specialists!?) I sent the ordering doctor an email and she said she didn't order the test implying she didn't know how to read the results since it's not something she ordered. I called the lab and they looked at the order and said it's circled. We repeated the lab but from what they told me and what dr google told me if my 4 year old female child has a testosterone of 40 it's probably NOT a good thing.
I don't even know how I will proceed if it truly is an abnormal result on the repeat and it's something life threatening that we could and SHOULD have started treating in October. Makes me want to puke.
Also neurosurgeon told uro he would consider doing exploratory spinal surgery if uro has enough indications.
oh haha and after that day from hell where my head literally felt like it would explode..our hot water heater had a leak and everything in the girls closet was soaked and the floor is ruined.
I randomly called endo because she was scheduled in May to see if we could see a resident and the dept head had an opening yesterday! Just in time because her urinalysis came back with an insanely low specific gravity. So we had to do more UA, and labs, when they took us to the lab room, she legit bolted out the door, with no shoes and no coat. 4 is proving to be very unreasonable for medical treatment!!
So we have to see nephrology too because they dont' think her kidneys are working properly, want us to take some bladder meds and start cathing again but everyone knows that's semi-unrealistic, and the last weird piece of this puzzle is some labs she had done in October..a testosterone level of 40. The endo was like this can't be right, why did they order it? I had no clue, he said the lab values are for an adult, and so the results werent' flagged. (How many drs have looked at these results you ask..hmm maybe 6 specialists!?) I sent the ordering doctor an email and she said she didn't order the test implying she didn't know how to read the results since it's not something she ordered. I called the lab and they looked at the order and said it's circled. We repeated the lab but from what they told me and what dr google told me if my 4 year old female child has a testosterone of 40 it's probably NOT a good thing.
I don't even know how I will proceed if it truly is an abnormal result on the repeat and it's something life threatening that we could and SHOULD have started treating in October. Makes me want to puke.
Also neurosurgeon told uro he would consider doing exploratory spinal surgery if uro has enough indications.
oh haha and after that day from hell where my head literally felt like it would explode..our hot water heater had a leak and everything in the girls closet was soaked and the floor is ruined.
DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned
DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3
http://justthetipblogg.blogspot.com, The Neglected Blog.
This discussion has been closed.
Re: And then I cried.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
And we have orders for 1st morning urine and blood draw after making her dehydrated. I told her she can't drink after 6pm tomorrow and that was met with some serious anger!
I really really really hope the testosterone comes back tomorrow before the weekend, I don't know how much longer I can wait.