Sunday, February 2, 2014

One month post Transplant

It's so amazing that it has already been over a month since transplant.  We spent 11 days inpatient during the transplant stay.  5 days in the PICU, and 6 days on "the floor" monitoring meds, electrolyte changes and immuno suppression levels.  Preston's primary immuno suppression drug is called prograf.  It is given twice a day (8am/8pm) in conjunction with another med called Cellcept.  At the time of discharge from the transplant, his medication schedule was super intimidating.  We're used to having a spread sheed of medications so it wasn't a huge problem, but everything was so different from what we had been taking pre transplant.  It was just one more new thing to get used to.

 Follow up appointments immediate after discharge were twice a week with lab draws twice a week (or more) depending on his Prograf level and if the dose had to be tweaked.  The first 6 months post transplant are the most critical and the suppression level is kept quite high during this period while Preston adjusts to his new kidney. Apparently it's common to be outpatient here about 90 days post transplant if all goes as planned.  Other than transplant clinic and labs we're going to a serious amount of other clinic appointments including Occupational Therapy, Physical Therapy, Urology, Neurology, Nuro Surgery (follow up for Preston's brain hemorrhage at birth), and Endocrinology for hypothyroidism caused by the congenital nephrotic syndrome.  It's literally a full time job going to and fro all of these appointments.

We're currently staying at the Ronald McDonald House.  We have a small room (like a double bed hotel room) and there his a big mess hall style kitchen and dining area with a common area.  We're keeping Preston pretty sequestered because he is so immune suppressed so he stays in the room unless we go from the hall to the elevator to the garage out to clinic appointments.  We've ventured down to the kitchen and outside a couple times but the Nephrology Team has informed us that there is a raging virus going around and not to expose him or ourselves by co-mingling with the other occupants at the house.  We've considered finding a small house for rent or an extended stay hotel room where we can spread out a little more, but it's hard to do so not knowing how long we will possibly be here.  Our insurance doesn't cover travel or hotel stays, so we're trying to be conservative at the same time as we are looking out for Preston's needs.
(This is Preston keeping track of all of the deliveries at the house.  He loves to look out the window at all of the trucks and cars, and the crazies that are at the Stanford mall right across the street.)

We're back inpatient now for a urinary tract infection.  It's interesting to me that a UTI for a "healthy" adult is a simple clinic appointment where they throw a random anti-biotic at you and then you go on your way.  For Preston he experienced a fever over 101.4 at the time we brought him to the ER.  It rose up to 102.8 and was up and down all day.  We were in the ER from 11am to 9pm until we finally were admitted to a room upstairs. I've never quite seen an ER like there is here at Stanford/LPCH.  It was CRAZY.  Metal Detector and airport style screening at the front door, triage right there in the waiting room, and luckily since Preston is a transplant patient with such a low immune system, we were in the door and in a room in about 10 minutes time.

Why are we still inpatient instead of getting antibiotics and being sent out the door?  They have to determine what kind of bug Preston has. (Pseudonymous) and now have to determine the "sensitivity" of what antibiotics will effectively treat and kill the bug.  He is currently on 2 different broad types of antibiotics and once they find out the sensitivity, they will be able to switch him to an oral version to treat him with a 10 day dose.  They want to keep him here for 48 hours after changing to the oral dose to make sure he doesn't spike a fever again and to be certain that the antibiotic is doing it's job.  So here we sit, knowing we have at least 2 more days here if the sensitivities come in today.  However being that it's (Superbowl) Sunday....the likelihood of anything happening today is slim.  Weekends at the hospital are like molasses.  You pretty much can count on waiting for anything to happen until Monday.

Aside from this little hiccup, Preston is doing AMAZING and we're proud of how many milestones he has accomplished in the short time post Nephrectomy.  In that time he's learned to crawl, walk, run, army crawl, bear crawl, belly flop (even though it scares me to death!), slide down of the bed and so much more. He's gained about 6 lbs and several inches as well. It feels good to finally feel like he is "healthy" and catching up.

So Long Dialysis!

The last two months have absolutely FLOWN by extremely quick.  In the midst of it and our nightly 12 hour dialysis cycles, Tyler and I constantly reminded ourselves that people do this dialysis thing for years, and that we should feel very blessed to only have/get to experience this for such a short period of time.
Good Bye Baxter Machine!!! This was the last time we had to see "End of Therapy"!

I think because it's been only 2 months we almost feel like we've just learned the routine and have settled in and now we are again preparing for another new adventure.  This next adventure (although not our last adventure, I fear, in this scary kidney journey) I feel is going to be the most exciting venture that will help Preston thrive, grow, and develop into the person that he will be.

There are many things we will not miss about dialysis. Like sleeping on a twin bed in P's room on the floor, trading off nights monitoring Preston's machine and tubing, getting only a few hours of sleep every other night (we trade off), not sleeping together in our own room since September, Preston's nightly vomiting an middle of the night linen changes, and I could continue.  The important thing is that we are almost done with this chapter  for the time being, and we appreciate the sweet things in life even that much.  Ill never underestimate the luxury of sleeping in the same bed more than one night in a row or sleeping a full 8 hours a night.

On the other end of our complaints, we have much to be thankful for this year, and for the past 2 years thus far.  We're especially thankful for our family and specifically Preston's donor, Uncle Cody. Not only has Cody willingly volunteered to be Preston's living donor, without any hesitation, his family has made extreme sacrifices on our behalf and on Preston's behalf.  We are and will be forever thankful for Cody, Megan, Louden, and Cael for allowing us to interrupt your Christmas celebration this year, and by sharing more than a kidney.  You guys are all amazing and we love you.

I have no doubt in my mind that this will bring our families closer not only this year but from this point forward during this time of the year, not only will we have Christmas to celebrate, but we will have a day of thankfulness and celebration every year on December 20th, and then Tyler's birthday on the 21st  (might as well make a week long event) and I hope we can all celebrate all of the festivities as a family.

May you all have a Merry Christmas and I ask that you say a little prayer for the entire Miranda family. Friday is the big day and we've been preparing for this for about 19 months.  It seems like its taken forever to get here but it's crazy that the day is almost here already.