Nephrology Appt

Well, we get to the nephrologist yesterday and Gavin's blood pressure was totally normal! Not that we are complaining, believe me. But he said that due to his risk factors, we might as well get everything checked out. That way we know (for now anyway) that everything is good. He also suggested a low sodium diet - which I will start tracking Gavin's food, but I believe he is not getting more than 2500 mg of sodium a day. I track what I eat and I rarely go over that (especially considering that Livestrong only has around 1600 mg for the recommended amount). One of the things that is out is Gatorade and sports drinks, which he was bummed about, but I think we will know if he can have these things on occasion once we start tracking his food and seeing how much he is really getting.

He's also not supposed to have any caffeine. So we will have to check labels, because there are some soda's like Sunkist Orange that you would think are ok that actually contain caffeine.

Before we left the office, he peed in a cup, and we were on our merry way to tour the hospital. First up was an echocardiagram, kind of an ultrasound of the heart. We had to go from the west side of the hospital over to the ER where the outpatient registration was. Once we checked in we had to go to "the farthest part of the hospital we could send you" according to the registrar to get the echo done. We got over there, and got in fairly quickly. He took his shirt off and they put the leads on him to measure his heart rate. I wasn't prepared for seeing those little sticky pads on his body and the wires coming from him - the size of the leads would have covered most of his abdomen when he was a baby. It was surreal how it sort of transported me back to the NICU.

Gavin tried to stay still and not talk as she did the echo. Unfortunately, I have no idea what I am looking for, and the tech didn't give any indication.

Then we went all the way back to where we originally started, the path lab in the same wing as the doctors office. Gavin was very nervous about the blood draw and even squealing with they tied on the rubber band. Clearly this boy is no longer desensitized from all his poking the first couple years of his life! He started crying when they used the alcohol wipe and I had to remind him that wasn't even the needle yet. (Gavin is a bit of a showboater, so I'm not sure how much this actually hurt vs he wanted the attention of it hurting). He squeezed my hand and we had to remind him the importance of keeping still. As the needle went in, he got in the poor lab tech's face and screamed "OWWWWWWWWWWWW" at the top of his lungs at her. He whimpered until it was done, and then he was just fine.

We then embarked on our mad rush to get Sam, get home, get snacks, and get dressed and to his soccer game. Where he did an amazing job and had several great assists and some good goals. It is so fun watching him evolve in this sport. I snapped some action shots which you will likely be seeing on here some time in, oh, November or so.

Quotable

Thanks to Amanda for posting this quote on Facebook this morning!

You did then what you knew how to do, and when you knew better, you did better
~ Maya Angelou

This applies so well to parenting. Your kid doesn't come with an instruction manual, although there are so many parenting books written, you couldn't possibly figure out which one to follow. My mom said it best in my post about kindergarten - you make the best decisions you can at the time, with the information that you have, when done with love, that's the best that you can do.

It's also a great reminder that every day, every experience, presents an opportunity to learn more, to overcome another challenge, and to use that experience to better inform your decisions in the future.

So while we should never lament the decisions we've made, we should also be vigilant to always do better when we have the chance.

In other news, Gavin's blood pressure was down a lot today. Lower than any recorded measurement in 4 years. I am really glad it's down, but it's a little frustrating that this measurement is down at the 11th hour. It makes me want to hook him up to a machine 24/7! I know I just need to be patient and wait for the Dr. visit....but it's kind of like when their fever is 104 at home and fine by the time you get to the Dr's office - even though you had valid reason for concern, you feel a little silly when they stop acting sick the minute you get the office.

Nephrologist

From Wikipedia:
A nephrologist is a physician who has been trained in the diagnosis and management of kidney disease, by regulating blood pressure, regulating electrolytes, balancing fluids in the body, and administering dialysis. Nephrologists treat many different kidney disorders including acid-base disorders, electrolyte disorders, nephrolithiasis (kidney stones), hypertension (high blood pressure), acute kidney disease and end-stage renal disease. Nephrology is a subspecialty of internal medicine. In the United States, after medical school nephrologists complete a three year residency in internal medicine followed by a two year (or longer) fellowship in nephrology.

While many micro-preemies get released from the NICU with a list of specialists, we were part of the lucky few that didn't. No pulmonologist, cardiologist, no issues that couldn't be addressed by our pediatrician.

Until now. In two months and 1 day we will celebrate 7 years outside the NICU. Oddly enough, 7 years ago today Gavin was recovering from a blood borne staph infection, fighting to get off the vent, and being administered doses of a medication that could have impacted his kidneys (but that was completely necessary to help his heart and avoid surgery).

Gavin's blood pressure checks have continued to run high at school. We have officially been referred to nephrology. It's hitting me really hard. I don't know why. We've been extremely lucky with Gavin's health and avoiding many long term issues that accompany being born 3 months too early.

I guess maybe I'd thought we were safe. That there was nothing else that could touch us. I'd let my guard down, started seeing him as a normal kid, didn't really worry about lifelong issues anymore. I feel blindsided. And I'm mad at myself for not being on top of the blood pressure readings, and not knowing that they were high in the past, and not knowing that preemies were at risk for high blood pressure. Preemie mom guilt is a nasty beast to shoulder. And it's hitting me pretty hard today. I'm not usually much of a crier - but it's rainy and gloomy out and I catch myself tearing up frequently.

I know it's probably nothing. And I know if it's something - even a big something, we'll get through it like we've gotten through everything.

But for today I'll wallow. And take the afternoon off for some shopping therapy. That always seems to help.