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BEWARE OF “THE BOX!”
First, let me say that I STILL have not spoken with any doctors. When I woke up this morning and checked email, our medical case manager had the latest results waiting in my email box…stating that she had talked with the PCM’s nurse who “approved” her sending the results to us. So, we haven’t spoken with ANYONE.
The Vitamin D 25 Hydroxy test states that kiddo has, apparently, insufficient Vit D…something someone out there had already predicted to me. The results state the following:
Vit D 25 OH Total 25 ng/mL (20-100)
Then below it has a little “explanation” of Vit D (below 20 is DEFICIENT, below 30 they list as INSUFFICIENT) and the difference between the D3 and D2 results, and where those are generally derived from. Below that, it shows:
Vit D 25 OH, D3 25 ng/mL
Vit D 25 OH, D2 <4 ng/mL
So it’s about time to push to talk to someone and have them explain this all to us, what it all means, and what we might do… if there is anything to even do… or if any of this is really even significant.
I came across the following though, if anyone is interested in a good article on Vit D:
http://www.paml.com/Files/TestUpdates/90177346_VitaminDGuide.pdf
It states that deficiency can lead to increased PTH, which kiddo doesn’t have at all. So plenty of questions remain…
UPDATE:
Our PCM is GONE until mid-week NEXT week. No additional help/answers…questioning the nurse, who it was stated had reviewed and approved the results to be sent to us, could not answer anything, and wanted to know “when are you following up with the OS about all of this?” which obviously was without answer. The only pending appointments with the OS are a pre-op and the actual hip surgery for kiddo.
Sent email regarding everything to OS, waiting to see if we hear back. Otherwise, the only other opportunity FOR ANY communication with a doctor (PCM) we were told was to schedule AN APPOINTMENT when he gets back. It is next Wed, which will be THREE weeks from the last draw with the latest results.
All this bloodwork without any doctor communication. What’s the point then???
March’s surgery is approaching quickly.
So here it is, the end of another medically filled week.
Scheduled #1 kiddo for his cardiology appt, and they informed us we needed chest xrays to bring with us “to check on the placement/location of his heart.” Interesting…didn’t realize that could be determined by xrays. Also don’t get why they can’t do it THERE.
So the local place couldn’t even put it on cd for us so we’ve got 2 big honkin’ xrays to hand carry to his cardio appt, just over another week away. Lucky us, it was POURING rain, too…so kiddos held on to them under the awning while I ran to get the car and picked them up. (lucky I CAN run again though, right?!)
I wont’ be going to the cardio appt. though…not this time around. It’s hard having to choose between both parents actively participating in our kids’ healthcare appointments vs. taking both kids out of school so much to travel, travel, TRAVEL to fricken medical appointments. So this time pops is going…while I stick with getting kiddo #2 where she needs to be, kind of like what we did the other day locally when kiddo #2 had an appt dad went to while I was there for kiddo #1 and what he needed…as we continually strive for some sense of NORMALCY.
The end of the week also came without any additional info on kiddo #2’s bloodwork…and still no response/conversation/communication from any doctor about anything I’ve asked during the last few weeks. Zip, Zilch, NADA.
Time is ticking away. We are closing in on kiddo #2’s pre-op and surgery next month, but still not knowing what this “bone disorde” might be that they’re referring to. I’d rather them just say IT IS NOTHING so we can move forward with confidence in the surgery, but that hasn’t happened yet…and to bring in other doctors (ie. endocrinologist) to talk amongst the others but without anyone (dr wise) talking to us…well, it doesn’t help BOOST confidence either, in a couple regards.
Time is also ticking away now as we await hearing about the potential/pending/possible move. The good news is a realtor had wanted to come today and not only said I had a beautiful home, but also told me how wonderful a job I did…and point blank asked me if I’d ever considered going into real estate because I was so good! Wow. After the crap we’ve dealt with…yeah, that positive boost was well appreciated/needed. Oddly enough, that realtor isn’t JUST a realtor…he actually has his BS in business, his MA in counseling psychology, and his PhD in pastoral counseling. It’s no wonder we spent nearly an hour conversing! =)
On top of it all, one of kiddo #2’s (hip kiddo) best girlfriends just found out they’re moving…overseas by this summer. That sucks, because this is a VERY close friend of hers and they are together A LOT. With the upcoming surgery, our potential trips house hunting elsewhere, and their upcoming move overseas…it sure just cuts down on the time they’ll get to spend together before the big day. Sadly though, they could have moved in the same vicinity/direction we’re probably headed…but the parents chose not to. They just wanted to be somewhere, anywhere, in the Pacific Rim again.
So it’s the end of another week…tomorrow kiddo takes her 1st college test! WOOHOO!!! Not too shabby…for only 12! =)
CA+ TOTAL 10.1mg (8.9-10.4)
PTH INTACT 29 (11-74)
still awaiting the rest…and to talk to a dr…
What is spinning, you ask? MY HEAD!
I took #1 kiddo for a physical today for spring sports so he can try out after school. I answered forms clearly, fully, and honestly…including about his asthma and that, as an infant, he had been detected with a heart murmur but nothing ever since. Nobody ever heard/found/saw anything since. Today was different. Today the docs (yes, 2) heard some abnormality.
That’s when they decided, after mentioning hearing some sinus function issues, to do an EKG. So they did one. Then they did two. Then they did a third one.
Our #1 kiddo has now been diagnosed with sinus arrythmia and sinus bradycardia. There are some related diagnoses in the family (myself included) but I really wasn’t prepared, ready, or anticipating any new medical issues today…and now we are awaiting the doc’s referral to a pediatric cardiologist…another few hours drive away AGAIN.
Recent eye appointments were good for our hip kiddo, but #1 kiddo also was WAY worse in one eye and we got another new prescription of glasses for him filled over the weekend.
I was told today from school personnel that the kids seem stressed. Hmmm…with all that is going on, which centers around them, how could it not affect them? No matter how hard I try as a mother.
I spent the weekend putting our house for sale. Don’t know if/when we’ll get any bites, but after hearing more and more information that it looks pretty likely that we will be moving, I figured the early bird gets the worm and it’s worth getting a jump start. Personally, at this point, I’d be happy just to break even and not take a loss on a home that’s only been owned for 1 1/2 years (hence why we’re selling by owner).
In the next few days we should hear about our hip kiddo’s latest blood results…hopefully. Maybe even this time a real live doctor might finally talk to us about what’s going on. One can only hope…
It appears, and will be confirmed tomorrow, that our #1 kiddo has been selected for his summer academic placement as hoped for!!! And the best news of all: HE HAS RECEIVED FINANCIAL AID which will cover OVER 30% of the costs for us!
This has been a crazy month, even crazier last couple weeks (days, hours…lol) and it is SO wonderful to have found out some positive news! The grass CAN grow greener…now, let’s hope in kiddo’s medical regards, too!
Ah…the plunders of our lifestyle. We might be moving this summer! (yet again…)
Now, the question is: TO WHERE?
Apparently, it’s either to FL or NC…oddly enough, one makes us feel good about the weather (warmer makes us happier) while one makes us feel good about medical availability and education.
I guess it’s a good thing we planned kiddo’s surgery for March as opposed to the summer…I could not handle trying to move AND have her going through surgery all at the same time!!!
Now, back to researching our options!
That’s what came of the phone tag. Two more vials taken today, results to hopefully get to the bottom of things…in a week or so maybe.
The ortho spoke with an endocrinologist and then to the PCM, the PCM nurse contacted us. I have not been able to speak with a doctor yet regarding continued high results…not that I haven’t tried, mind you.
The PCM apparently has stated that if results come back abnormal yet again (the most recent alk phos was higher again…a 790 last time around) then perhaps a bone scan. Today’s draw is to check:
“PTH intact and calcium, 25 hydroxy Vit D”
All in all, it’s just another prick in the arm…of which, kiddo is starting to feel like a little pin cushion.
