We have several follow up appointments with all of the specialists including Neuro surgery, neurology ophthalmology, nephrology, hematology, endocrinology, and our local pediatrician. This last month we have traveled to Stanford once and UC Davis 3 times. We've transferred services to Stanford for Nephrology and for the upcoming transplant, but we continue to see the Neuro Surgeon at UC Davis for the time being. We will likely transfer services just before the transplant so we will be seeing all of the specialists at LPCH eventually, but for now we're comfortable with Dr. Lee, Preston's Neuro Surgeon.Being split between two different hospitals however isn't always easy. Tyler and I find that we're doing the communicating between the doctors, constantly getting copies of labs, scans, etc and sending them back and forth. Ultimately it will be much easier to be in one place.
Developmentally, Preston is also doing awesome. He's vocal and cooing like crazy, sitting up but still needing some support. He's reaching for toys and can hold and play with toys. We do notice he is a bit sluggish on his right side due to the bleed in his brain from when he was born, but he can still move it and grab things he just prefers to use his left hand. This kid has no lack of stimulation that's for certain. We're blessed that one of us can always be home with him, since we're kind of forced to with his immunity conditions. We play with him and keep him busy (or rather he keeps us busy) all day long. On the day's that he has his infusions, my sister or grandma come over to help. Thank goodness for nurses in the family and it's not a one person job. Their help also affords me some time to work a little bit during the day when they're here.
Preston is eating like a champ and the nephrologist says that we can start him on cereals now that he's 6mo and has grown so well. He still is getting his formula super fortified with extra calories and protein since he pees it all out so we have to supplement him in hopes that he will at lease absorb a bit of it. So now that he's starting of food, guess what?? He has new teeth to try out! Yep he's had little teeth nubs since he was 3 months old and one finally broke through yesterday and another one today. Tyler says he'll be eating deer meat before we know it.....we'll see about that.
Aside from the new normal, we're also looking forward to what's next. It's scarey for me to think of the next steps. We've just gotten comfortable with what we've got going on now. In October, we have a transplant evaluation appointment. At that time, we will do some preliminary testing on all three of us. Tyler and I will be tested to be potential kidney donors, and Preston will have test too to compare with our labs. I understand from the transplant team that they will really be putting us through the ringer to make sure that we are physically, mentally, emotionally, spiritually, etc. etc. ready to be a donor. I guess we will end up seeing about 6-10 different services throughout the evaluation. I'm sure it will be a long and emotional trial, but of course Tyler and I are willing to do anything to give Preston the opportunity to have a "normal" life.
So then next everyone asks......how will an adult kidney fit into a baby? I don't really know the answer other than the doctor states that they actually will NOT take a transplant kidney from anyone under the age of 18. With them removing both of Preston's kidneys and only getting one in return, they assure us there is enough room. Apparently a kidney is about the size of a small fist, which still seems so big to me. I guess this is why the babies must be 10 kilos to be able to be transplanted.
Tyler and I have done a lot of internet research. It puts our minds at ease of what's to come, and scares the crap out of us all at the same time. We've stumbled across a blog of a family that currently lives in Texas that has twins. Both of the babies have congenital nephrotic syndrome, aside from other complications. I can't even imagine. They are amazing superstar parents in my eyes! I know what Tyler and I have going on daily, but multiply that by two?!? Superstars......
So what's next in our journey? The next big thing will probably be later this year, but we don't know exactly when. Nephrectomy. Uuuugggg.... Both kidneys are coming out and P-man will have to go on dialysis. He will hopefully only need to be on dialysis for a short time and just to rid his bodies of the nephrosis that could harm his new kidney. They tell us that he could be in the hospital up to a month but possibly only a few weeks. Sounds like at least 2 weeks will be in the hospital dialing in the dialysis and teaching us the new routine of how to do a daily dialysis treatment. We will be able to come home before the next big step (transplant). There are a lot of unknowns for us at this point and we will defiantly be learning as we go.