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.