If there's one thing we have learned about the medical world, it's that there is never a date that is "chiseled in stone". It seems like we have had so many plans to move forward with Preston's surgeries that have all been based on speculation on his weight gain. Tyler and I roughly keep track of the calories per kilo that Preston eats/drink (yes we are over the top OCD crazy) so that we can guestimate how long it will take him to get to 22 lbs. (ie. transplantable weight). In looking at his growth curves last year it was looking like February/March 2013 would be about the time he would make it....but that came and went, and he's been steadily hovering at 21 lbs. for the past 3 months. Not moving a muscle, in fact this last appointment he had lost 4oz. Feeling frustrated that Preston may just be "maxed out" in calorie intake, and the fact that his kidneys that are leaking protein like a sieve, it may not be possible for Preston to gain much more weight until he ditches these kidneys and goes on dialysis.
Preston's Doctor has recommended that we have his kidneys removed and that he will likely have an easier time growing while he is on dialysis. There is however the fear that he will lose weight as well while he's on dialysis. If he does lose weight, it will likely be fluid weight that he's been retaining due to his current junk kidneys spreading his fluid out to his tissue. So, we'll have to wait and see what happens once this beans are removed. During the time when he's on dialysis, they will monitor his labs and they will be able to monitor the point when he his no longer "nephrotic". They tell us at this point his immune system will be relatively normal and that we can escape the safety of our clean home environment, go places, see things, meet people!!! We will have a short period of time to do so because once he's transplanted, he'll go back on the immune system suppressing medicines and will have to be closely monitored and probably again isolated.
This "penciled in date" is July 15, 2013. This hospital stint will be about 2-4 weeks, we're told and we'll be down at LPCH for that time. At this point our contingencies for the nephrectomy is really only one thing. We are waiting for the green light for Tyler to be approved as Preston's kidney donor. This last week he completed a boat load of labs and scans including (and I'm sure he'll be pleased that I'm sharing this, lol) a 24hr urine collection. Yep, that's right, he got to pee in a jug for an entire 24hrs. He also had fasting blood labs, a second set of labs and they probably took a half pint or so, ECG, MRI, he met with a nephrologist, and a nutritionist, and he still will need to meet with a surgeon, who apparently is an advocate for laproscopic removal in the donor, a kidney advocate who will determine if Tyler is safe and sane enough to be a kidney donor, and one other, but shoot I can remember what/who it is now.
Tyler will make another trip down to LPCH probably within the next week or two to meet with the last few Doctors and once we have a green light that Tyler will for sure be the kidney donor, that chalked in date for the nephrectomy, will maybe be written in erasable ink but certainly not indelible marker.
Monday, June 10, 2013
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 planned....so 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.