Tuesday, December 9, 2014

CXR, TPL/VP Shunt (appreciating Provider openess and honesty)

I'm just going to say I love how alike my Peds Neurosurgeon and I think on some things, in this case how the 2 shunts function and aid each other - the TPL we've always considered to be the stronger, better functioning of the 2 shunts and seems this latest VP Shunt surgery proved this once again.
I wrote about the Pulmonary Appt last week and Chest Xray (CXR) results showing 50% improvement in the Pleural effusion (fluild build up in area around L lung which is also the space the TPL Shunt drains to). To coincide with this since the VP Shunt surgery and although the cough has cont'd to be pretty persistent throughout the day it is still at about a 50% improvement from prior to the VPS revision. (that is saying something given how many of my ERT Nurses have commented "that cough really doesnt sound good" and "if only you could get rid of that cough now" b/c it's there consistently throughout the day. Still the improvement I did get was nice - now instead of a constant (sounding like) smokers cough I just have that hack about 25% of the time and the rest of the coughing time is milder/not as deep.
I emailed the most reecnt CXR results (released on my PMD's MyChart system) to my Neurosurgeon and Cardiologist and my Nrsgn commented back (which is almost exactly how i've described the function of the 2 shunts to other Providers/my Nurses/family/friends):
"I suspect it improved because your other shunt is now working, putting less stress on your thoracic-pleural shunt. Kinda proves our theory that they work together but don't quite add up to two shunts. Just my initial thoughts."
I love that about Dr.Bragg, that she's so willing to share what her thoughts are and really when it comes to the shunts, either b/c i've learned from her or for whatever reason we think alike on areas. =)

I see her in f/up Weds morning (bright and early as it turns out) and then my PMD that afternoon (Hand pre-op) which perhaps less than ideal the time between the 2 appts BUT still better than making 2 trips to Madison on top of today's trip to Milw. for ERT and Thurs's trip also to Milw for an Appt!
There's been some question on my part about a ugag MPS test (test the level of glycosaminoglycans in the body in pts with MPS I) that was done and 2 drs in the MPS Community commenting the wrong test was ordered and results that we got wouldnt be accurate. My PMD asked that I bring the results from Genetics with me so pehraps she can help sort this out.
Next week in addition to the usual ERT (monday) is a Cardiology Appt on Tues (whch btw INR by some miracle was back in range today just 2.5 short weeks post the VPS surgery! Amazing given all the stuff given to bring INR down that Thurs when surgery was post-poned to Fri.) and then I leave for FL Weds morning for 5 days (Disney-MPS Conf.). =)
Will update after both appts if there's anything to update about.
Thanks for stopping by,
My Sunday School kids and I did the ceramic ornaments (stars for the star that lead the shepherds to Jesus in the Manger) as a craft though our lesson was unrelated.
The kids enjoyed it and something they'll have if they wish forever.
And last my tree this year - pretty simple :)

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