Wednesday, August 5, 2015

Nephrology & Cardiology

The week after Ultrasound Day, we had our follow-up appointments. I was hoping that all the ultrasounds would be finalized and everyone would have what they needed, but that wasn't the case. None the less, the Monday after our trip to do ultrasounds, we were off to Dr. H, the nephrologist. I thought this was going to be a routine appointment. Boy was I wrong!

Yes, we had overcome our fear of docs and now Princess WANTED to do "squeeze it" (have her blood pressure taken) and didn't freak out when the doc listened to her or anything. So that all was good. What wasn't good was her blood pressure! It seemed like we were right back where we were two years ago. Diastolically (bottom number), she was right about where she should be, but systolically (top number), she was high. Like, WAY high. I was having visions of the NICU and PICU again. Dr. H thought it was because Princess was freaking out, but the nurse totally SAW how calm Princess was being. You couldn't get much more calm than her! So it wasn't that. Well, we agreed to increase her meds, do the labs and then see what Dr. K got the next day (because she went to him the very next day). Dr. H was convinced that he would get something better and he would send a text message about it.

The Doc is In!
The one thing I did find out is that apparently Dr. H and Dr. K actually KNEW each other back when they were both in Dallas, TX. How strangely wonderful!

So after labs, we headed home.

The next day we were in Dr. K's local clinic. So you know, he HATES his local clinic up here. Not because of the patients or anything, but because the hospital STILL uses paper! He is not the one to be walking around with a file folder in his hand. He'd rather have an iPad and his iPhone. I'm sure if he had the app for ultrasounds, he'd be doing them on his iPhone!

Well, Princess's blood pressure was "better" at Dr. K's office. Not great. Not wonderful, but better. So he wanted to see us again in two weeks to check and he'd text Dr. H. (He actually did that in front of me.)

Wait, two weeks? What happened to six months????? Yep, we're going backwards here!

So we went back in two weeks. Again, blood pressure wasn't perfect, but was better. Dr. K actually took her blood pressure IN the room with her and saw how calm this kid was. FINALLY a doctor sees all the work we have been doing overcoming our fear of the blood pressure machine! He texts Dr. H like just about in front of me. Like, if I wanted to, I probably could have read it! He says to come back in a month. Okay, that is a little better than two weeks! Moving forward again.

Awww...they do love each other!
In the month between seeing Dr. K, Princess has a paperwork appointment with Dr. M. God, I hate paperwork appointments, but it seems that Dr. M may have finally gotten all of Princess's records and is starting to get notes from the other docs because she actually fills out the form for Welfare for me without an issue! And while we're there, they check Princess's blood pressure. She comes out just about NORMAL! (Normal for her age is about 80s/40s....she was 82/58.) What?!?!?!?!?!?! This kid has NEVER had a normal blood pressure, like EVER! Even on the meds, she runs just a tad high, but Dr. H is fine as long as it's not "too high." Come to find out, they were using an "adult small" sized cuff on her. Um, have you seen her arms????? There is NO WAY she is even CLOSE to using an "adult small." Heck, she should probably still be using the "crawler" one, but they use the "child" size on her at both the cardiologist and the nephrologist's office.

Cardiology selfie!
Okay, so we'll chalk that "normal" blood pressure up to using the wrong sized cuff. We then were BACK at the cardiologist's office. And yet again, we were pulling about the same numbers: Low 100s/60s and even a few 90s/60s. Apparently Dr. H was okay with that. So we go back to Dr. K at the end of September and back to Dr. H at the end of August.

Oh, and about her ultrasounds: heart looked good and the kidneys I THINK look good. I'll know more at the end of the month.

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