Monday, June 10, 2013

Planning for the big event.

I have failed at my plan to blog more frequently for the sake of keeping everyone informed on Preston's progress.  Things have been nice and quiet and we're doing everything that we can to keep P healthy and growing.

Last month at Preston's visit with the nephrologist, we discussed the coming events.  There wasn't anything too surprising to us, but it's just getting to be a closer reality.  Preston weighed in at 20lbs 15oz, which was actually down 1oz from his appointment the previous month.  The minimum weight he can be for transplant is 22lbs (10 kilos). So, we've been trying everything we can to plump the little guy up.  They did also warn us that he is likely retaining a good amount of fluid that he may lose after his nephrectomy that he will likely have to catch up on.

Preston still has a little aversion to solid foods.  He's okay with purees, but is VERY particular.  He of course like's ice cream and milk shakes, but we've noticed that he does have some intolerance, and we assume to the lactose.  Go figure, it bothers Tyler too.  But, he still loves his baba, so that's what we give him.  Regular formula is 20 cal/oz and Preston's is 40.  So it's literally like sludge.  We don't make it with water either....vanilla coconut milk...he loves it.  We've noticed since we've changed to the coconut milk that he's taking more, so getting a few more calories in a day.  He's growing appropriately within the 40-45 percentile on his growth charts, which is amazing considering he's leaking all protein that he consumes.  Bottom line, he's growing....just not fast enough for us.

So what's next.  Aside from the weight gain, we're still undergoing testing on the living donor to make sure the donor's kidney is a viable match.  Once we for sure know we have an approved donor, we'll likely schedule the next step....the nephrectomy.

So once he has the nephrectomy, Preston will have a dialysis catheter placed in his stomach, where he will get fluids to filter out his little body.  He will undergo the PD (peritoneal dialysis) for probably 2ish months before the transplant takes place.  Everyone asks, "will you be in the hospital that entire time?"  From what we understand, if all goes well, they will train us on how to administer the PD and we will be able to come home after 2-4 weeks providing that all goes as planned......we know that nothing goes as we don't hold our breaths.

After this step, the transplant.  That will be another 2-4 week or so hospital stint, and then they tell us they like to have their patients close to the medical facility for frequent checkups, labs and "just in case"....So we'll likely be staying at the Ronald McDonald house, or will need to find housing somewhere that is "germ free" if possible because he will need to live a little sheltered because he will be acclimating to the anti rejection drugs, which are immuno suppressants.  This won't be too strange of a scenario for us.  We're already the biggest germo-phobes on the planet right now and have completely turned our lifestyles upside down for the past 17 months.

So this is the "plan" as we know it.

Aside from that, on a fun update, Preston is doing awesome.  He's wanting to walk....heck, who needs to crawl.  He can walk while holding one finger, so it won't be long.  He does still have upper body limitations on his right side that has prevented him from crawling.  He's not hugely mobile, but he's learning.  He's getting his knees under himself and is irritated that he can't crawl.  The hardest thing for us is to let him fuss, and figure it out.  We constantly have to tell ourselves not to come to his rescue.  We're afraid of falls, since he doesn't have the quick reflexes on his right side, and I fear that he's going to have broken bones along the way.

What else....CARS!!!  Preston absolutely loves Disney Pixar's Cars, and anything to do with it.  He recognizes the characters and loves the Tractor tipping, where he blows raspberries (okay....let's get real here.....fart noises) every time he sees them. So, I'm pretty sure he's a normal boy in that department.

We're having a lot of fun and he teaching us new things every day and it's amazing to see him grow and meet milestones that we were never sure if he would ever accomplish.  Aside from the occasional emotional roller coaster, and missing being able to just run a quick errand, or go hang out with the all of our friends at the drop of a hat, this parenting stuff has been pretty darn rewarding.  I think all of those lifestyle changes are an adjustment for any parent and not just The Miranda Family.


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