6 months and Celebrating!

Last week we visited Luciele Packard Children's Hospital for Prestons 6 month post transplant biopsy.  The idea of having a biopsy was really worrisome for me thinking we're going to disturb a perfectly good functioning kidney.  If it ain't broke, don't touch it.  The team advised us that it is routine to complete a biopsy at 6 months, 12 months and 24 months post transplant.  After that it will be as needed if something (scary) comes up.

I've known that a biopsy is a tissue sample, but what could they be looking for?  The short answer....rejection.  The biopsy is done under general anesthesia, and ultrasound.  A portion of the outer edge of the kidney is taken to identify if the kidney is building any antibodies in fighting the kidney.

Preston's labs have been amazingly stable (knocking on some serious wood right now), so we were wondering why would we even want to disturb that perfect functioning kidney.  The team said that the biopsy could show  advanced signs of rejection, even when it appears that the labs are within normal limits. This week we received news that it doesn't appear that there is any indication of early rejection or growth of antibodies against his new kidney!
We're finally able to start making plans without constant fear that we will have a medical emergency that will prevent us from participating.  We've been able to spend more time with friends, Preston has had a few play dates, he went down his first water slide yesterday, went swimming for the first time, and has gone to a few restaurants, and most importantly he will finally be able to meet so many friends and family members and everyone that has been encouraging us the last few years.  We are having the time of our lives being able to do new things and take Preston to experience life.  I always knew that being a parent was going to be rewarding; however I think the last 2 years have only made my appreciation for the "good times" that much sweeter!

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.

Making changes

It's been recently brought to my attention that this blog has been a resource for many other families with children that are born with congenital nephrotic syndrome.  I've been contacted via phone, by email, and even at my office.  I'm always happy to share our experiences with other families.  I know when our family started this journey I often felt very alone and felt like I had no where to turn.  I found a few blogs with status reports on other children, and a lot of information on google, medscape, webmd, etc that  was VERY scary.

The idea of having a child that was going to have to have a nephrectomy, be on dialysis and need a transplant and likely multiple transplants during his life time, was extremely devistating news to me.  Not to say that it's still not devastating but frankly we're used to this routine now, used to hospital life, and used to the idea that this will be a lifelong journey.  So, with that I would love to lend a hand or an ear to others, to answer a quick question of "have you experienced this?" Or anything I can possibly do to help I'm not proclaiming to be an expert or a doctor, just a mom that's learned the ropes by default.  I've had a wonderful support system (including Tyler my husband, our families, co workers that have covered for us, friends that have fundraised for us, cooked meals for us, visited us, taken us on the lake to get our rears out of the house, etc.) My point is that we couldn't do this alone, and I thank everyone for all that they have done.  I only hope that someday I can be as gracious and generous as our support system has been to us.  Don't take this journey alone. I welcome the conversation so feel free to call, email, or send a message via Facebook.  The Facebook group is here:  https://www.facebook.com/groups/106418559380738/?fref=ts

I don't blog often, and if feel guilty when I don't, but I seem to sit and stew about things to get off my chest and when talking to Preston's nephrologist and telling him that I'm contacted all the time by other parents, he asked if they contact me regarding congenital nephrotic syndrome or about peritoneal dialysis and/or transplant.  So far my conversations have mostly been CNS related and I think that's because that's the stage we have been at with Preston, sot hats mostly what my blog has been about.  So, after giving some thought, I decided to make a change to the title of this blog.  "Living with Congenital Neohrotic Syndrome" was what we we're doing.  But guess what?  Preston's had his nephrectomy and is no longer Neohrotic, so he now has a History of having CNS.  That's right, we have polished off one chapter of this novel.  So the next/current chapter: Peritoneal Dialysis, The next chapter after that: Transplant.  So knowing this blog has not only helped me vent, my family and friends know where we are and what we're doing (especially since we haven't seen so many of y'all in so long), and also helped other families undergoing the same experiences, I've decided to include in the title all three topics 1) CNS 2) PD and 3) Transplant.  

Here's to hoping that you may now be able to Google any of the chapters along the way to kidney transplant and be able to find this blog helpful in your passage. 

-Vici

4 days post op bilateral nephrectomy

Well, we're nearly a week into this current admission, and I can say that this nephrectomy experience so far has not been nearly as scary as I thought.  We arrived late Monday night and Preston went into surgery around 10:30am on Tuesday morning. The hardest part was kissing him goodbye as he went into surgery and then waiting for the long 5 hours until we were notified that he was in recovery.  He did great in surgery. The surgeon was impressed by his tissues and promptly came out to give us the details of the surgery.  He took a picture of his kidneys after they were removed and shared them with us.  One of the surgeons before surgery stated that she expected the kidneys to be smaller than a healthy child's and really light in color; however the reality was that they were actually about twice the size of a healthy kidney for a child his age.  I'm sorry if you're grossed out by this, but I'm more so documenting this for my own purposes because I intend to print this blog later for our own purposes. 

After surgery, his stats were stable, he was extubated immediately and went over to the PICU.  We were greeted by the entire team of doctors, surgeons, transplant coordinator, nurses, etc and they were all very positive and happy.  It was a nice feeling to know we had a great team who all came to see him post op to see the progress and to immediately cheer us on.

Later that evening we started our first round of Peritoneal dialysis (PD).  To explain the dialysis process, as I understand it, water with dextrose is pumped into the peritoneal cavity. Once there it sits for a period of time so that the fluid in his body can gravitate toward the sugar and fluid. Once that extra fluid is drawn to the PD fluid, it is then reversed and allowed to be flushed out of his body.  Without kidneys, Preston's body cannot rid his fluid intake out on his own.  What does that mean exactly? It means he doesn't create urine and cannot pee like a normal person.  It has been very weird this week having dry diapers.  A little sad, but also interesting to learn the science behind PD as well.  One thing I now understand is why other parents who have babies that have been recently transplanted are so dang excited to see a little (or a lot of) pee pee post transplant.  I can hardly wait for the day that Preston is able to make a super wet diaper.  I'm sure there will be a happy pee pee dance (done by me) and pictures involved.

The initial process is hardly fun. He is on the PD 24hrs a day right now.  The tube that goes into his abdomen is still healing so we can't hold him right now until it heals a little more. They are using the catheter already at a very low volume until it is able to heal more and then they can increase slowly the amount of fluid that can go into his peritoneum. He's right now doing cycles of 50ml (nearly 2oz) in, it sits for 20 minutes and then drains out for 5 minutes. So he is flushed in and out twice an hour, 48 cycles a day.  They are increasing his volume by 5ml daily and this helps to slowly build room/tolerance in his abdomen area for more fluid.  It's kind of like being sick for a long time.  You don't have a huge steak and lobster dinner right after the flu, you slowly start eating maybe mashed potatoes and jello until you feel good enough to have more....same concept.

Once he is "ramped up" to 110ml per cycle, he will be able to use a machine called a cycler, and then eventually not be on the machine for a 24hr nonstop cycle.  He will however need dialysis around 12 or more hours everyday.  It will likely be overnight because he'll need to be tethered to a machine. Suddenly Preston's albumin infusions that were 2oz over 4hrs three times a week looks like a pretty easy routine. 

I apologize if this is too technical or too much information, but I've recently been contacted by many other parents that have children with CNS that have found my blog by google-ing "Congenital Nephrotic Syndrome".  I'm thrilled that I've been able to help others with the blog so they know what they might expect, even if it is just so that they may know that they're not alone in their journey, and that there is and will be a light at the end of this very long tunnel.  I was going to say there would be a rainbow following the pee pee showers post transplant, lol.  Oh, how I keep a sense of humor through this is beyond me....

Here we go!

It's hard to believe it's been nearly 2 years since Preston was born and that we've been inside of this cyclone of emotions.  This last month has been especially challenging with Preston's recent hospitalization for an infections, having the doctors pushing us to make the next step in scheduling the nephrectomy, and still undergoing testing on candidates for living donors.

We are now at ease in knowing that we have a DONOR!!!  After several weeks of testing, labs, scans and many visits with doctors, Preston's Uncle Cody is giving him the ultimate gift.  Words are not enough to express our thankfulness for Cody, the sacrifices that he and his family will have in helping Preston though this bump in the road. We will all be forever thankful.  I've been a blubbering idiot the last few days waiting for the approval from the transplant team.  It's such a hard thing for us to even ask this of anyone, especially when we for so long knew that it would be Tyler or me that would donate our own kidneys to our son.  When we found out that neither of us were a candidate, we felt like we had let Preston down, and that we blew it for our family, although it was purely an anatomy issue that could not be corrected. 

Additionally, I would like to thank all of the generous individuals for stepping forward to be tested to be donor candidates.  The transplant coordinator was very excited that we had a receiving line of individuals that were willing to give this gift for Preston and that this is very rare.  We appreciate each and ever person that has considered this gift, has prayed for our family, that has donated time in raising funds, that has prepared us a meal, sent us a card, paid us a visit.  You're all amazing, and I'm pretty sure that we couldn't have made it this far without everyone's support.

I'm sorry if I've caused you to need a tissue.....Heaven only knows how much tissue I've used.  I should own some stock in P&G for all of the Kleenex this family has used in the last year.  This is all a hugely emotional time.  I feel thankful, scared, excited, frustrated, proud, and every other emotion all wrapped into one big ball of wax.  Another stress-er we've had this last month is with Preston's weight gain, or lack of weight gain.  He's developed a huge aversion to food, but will drink his formula still so we've been pushing to give him enough calories throughout the day, with enough fat and proteins to hopefully help him thrive.  The doctors have warned us that at some point, with his kidneys in place, he will not be able to thrive, and I think we have finally hit that wall.  He can't possibly drink enough calories in a day, and he's not been able to tolerate the high caloric formulas and protein supplements so he's been throwing up his milk.  It's a constant battle to get the calories in him and keep it all down.

So, now that we have a likely donor canidate (still waiting for final approval this week after the transplant team meets), and because we feel it's time and the doctors are pushing us really hard, we've scheduled an OR for 9/24 for Preston's double nephrectomy. At that time he will have a peritoneal dialysis catheter placed in his abdomen and he will undergo about 12-18 hours of daily dialysis.  And we though 4 hours of Albumin 3x a week was hard...  I'm not quite sure how we will manage it all, but we will have extensive training for several weeks inpatient.  At some point, we will be able to come home and perform dialysis at home.

The best part about being the time that P will be on dialysis is that we will hopefully be able to get out and about a little.  During this time he will hopefully have a little recovery in his immune system, so we hope to experience a little more pre-transplant.  I'm not sure how much we'll break out of our little bubble, and I'm sure that we will always live in fear of germs, but I hope that we can maybe have just a little bit of "normal"....whatever that may be.

Infection control

What a whirlwind this last two weeks had been. It all started on Monday 8/19 during Preston's albumin infusion.  Prior to his infusion he was his normal super happy, wild kid wandering throughout the house, playing in the bathtub and having a good time.

During his infusion he spiked a fever while sleeping and was nearly 102 degrees.  He seemed really uncomfortable and shaking and chilling and a complete 180 from his behavior in the morning.  We suspected an allergic reaction to the albumin or infection, so off to the emergency room we went in a flurry.  

On the horn to Preston's nephrologist at Lucille  Packard children's hospital, they were not surprised of the symptoms and said, we'll see you in a few hours.  At the emergency room thing escalated fast.  The fever rose to 104.8 and our amazing nurse got Tylenol in him quick, drew labs and collected a urine sample for culturing and sent them off speedy and skillfully.  Preston did experience febrile seizures but it wasn't after too long that the meds kicked in and the seizures stopped and fever was reduced to normal.  Off we went in an ambulance to the airport in Red Bluff.  I was able to fly with Preston to Palo Alto so I was thankful thathe didn't   have to fly this time by himself with the flight team.  Although it was scary, I will say it was kind of a fun experience, while I hate to admit it.

We did discover that Preston did have an infection of some kind and had symptoms of sepsis as it was in his blood.  They cultured his csf and did a lumbar puncture and thankfully that was negative, although he had already had antibiotics.  All further labs were all negative so it was evident that he was responding well to the antibiotics.  After several days the lab was still attempting to grow the bug to find out what type.  It was apparently a very difficult bug to identify because it ha to be sent to several labs, was slow growing and something that was typically only found in tropical regions and in South Asia. The team of doctors questioned if we had an iguana at home or any exotic plants, if Preston had been gardening or had any plant puncture wounds.  The answer to all of those was no so everyone was and is still scratching out heads.  The bacteria could have been transferred from his gut by means of something he ate that sat in his bowel, so of course I wonder, was it an avocado, a mango or the coconut milk that he are/drank? Or was it just a weird bug that was introduced into his IV line causing the infection? Who knows.

It only took Preston about 3 days to make a full recover, but try held onto us at the hospital for 8 days to monitor and try to identify the susceptibility of the infection and make sure they were treating him with the right antibiotics.

Preston is showing his skills with the stethoscope and his IV pump. We're practically pros!

So, I know I had many cranky Facebook posts while we were in jail, I mean at the hospital, but I am very thankful now in retrospect for the care that we received by all.  This trip also helped to prepare us for the next two steps in this journey.  We're probably going to be scheduling the nephrectomy soon, but we would like to know that we have a for sure donor candidate before we take that step.

Plan A....bust. Plan B....bust. Plan C....bust.

I've had a few folks ask this week what the plan is now. I figure instead of a few short winded vague facebook posts, it's probably time for a little blog update.  My last post, nearly a month ago, we were on track for Preston to potentially have the nephrectomy this month.  In fact it would have likely been sometime this last week.  As we're learning, things change very quickly in the blink of an eye and things have indeed.


As many of you know my sister was the first to be tested as a donor and she was unfortunately ruled out.  It was the first low blow straight to the you know where.....  Tyler wanted to be the next person to be considered so completed the last of his tests (labs, EKG, sonogram, erays, MRI) and met with several doctors and all determined he would be a good candidate for Preston's donor with the exception of the Kidney Surgeon.  After reviewing Tyler's MRI she had found that Tyler's kidneys were both more suitable for an older larger person because of the number of veins that were coming into the kidneys. Apparently smaller children have fewer vesstles and the worry is that there wouldn't be adequate blood flow to the kidney and it could cause scarring or failure.  One of Tyler's kidneys was way to close to his spinal column with a very short vein and would be too dangerous for Tyler to donate.

So Plan C.....me.  Totally up for the challenge of being a kidney donor, I immediately scheduled all of my tests and scans and went down last week to Stanford.  All was good with everything and so we were just waiting for the MRI to be reviewed by the surgeon before getting the go ahead.  I received a call from the surgeon this morning saying that my anatomy was very similar to Tyler's with the exception of me having an even shorter vein on my right side, so I would be an even lesser donor candidate than Tyler.  I now know how my sister and Tyler felt, and it sucks.  I honestly feel like I have let Preston down, and that I've let our family down. I was certain that I was going to be the "cure all"....dammit.

So at this point, we're not out of options, we have other family members that are willing to be considered and Preston can also be a recipient of a deceased donor.  In order to do so though, he will need to have already have his kidneys removed and be on dialysis and be "ready to receive". So we may need to make a hard decision here pretty soon on if we proceed with the removal without knowing if we have a viable donor, just in case one MIGHT come available.  I'm not hugely in favor of doing this unless absolutely medically necessary or emergent.  The doctor is pushing us toward this direction, simply because Preston will lose less protein while on dialysis and might possibly grow a little better.  There are of course tons of risks associated with either plan of treatment.

We're feeling a little defeated right now and appreciate all of the prayers and support.  We're beyond ready for a little good news and fewer u-turns.

Surgery date penciled in.....

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.

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 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.


Vici

Merry Christmas!!

Preston's first Christmas...I knew it was going to be pretty wonderful being a parent, but today my heart feels so warm. Although my parents are both recovering from colds and weren't able to come over today and we didn't do our normal Christmas scurry to all of the various family members houses, it felt amazingly nice to stay home with Preston and reflect on our year, and be thankful that we have him at home in our arms.

He is blossoming like crazy the last two weeks and getting interested in standing and pulling up, wanting to do the motions of walking (assisted of course), and tolerating more time on his stomach, reaching for things and attempting to crawl. We've come to terms that the three months inpatient and his medical condition(s) will likely mean he will take longer meeting his milestones, but we've watched him come along way. He is saying Dada, Da do, Baba, dog, book and mouths mom...but won't say it......darnit. He recognizes us in pictures and lights up when he sees us after arriving home from work.....and that feels so amazing.

Sometimes it takes a little reminder from someone that isn't by our sides daily. Tim, Tyler's dad was down from Idaho today and mentioned how impressed he was with the progress that P has made in three months time since his last visit. And he reminded us of what Preston's capabilities were just that short time ago and how much more he's doing now.

Also today we find ourselves reading a blog of another family who's baby was transplanted this past week down at LPCH. This baby is a twin and his sister had a transplant earlier in the year and they are going through the same experience again with their second twin baby. I'm sure it's extremely hard to be inpatient for Christmas.....well, it's tough no matter what day of the year it is, but Im sure its extremely hard for them today. The baby had some complications earlier in the week and briefly stopped producing urine, which is always a worry with a transplanted kidney, and so Tyler and I were both hoping for the best and then were relieved to find out that he was creating urine again. It's amazing how a little pee can make you excited, especially when your rooting for, and praying for a family that you've never met. I know I've said it before but its been a huge help to know we're not the only ones going through this and that it is being treated by world class doctors so close to home.

As I get ready for bed tonight, I find myself wide awake, my mind is racing. I had such a wonderful day here at home, even if we did just stay home, relax and not do much. I won't be sleeping anytime too soon. My racing mind is thinking about what's to come, what lies ahead and the planner in me is trying to think....just how are we going to do "this". I guess it's knowing that Christmas is now done, another year has almost gone, and we have some pretty HUGE things were about to encounter this coming year.....and I feel like I'm going into it with a blindfold on. Since we know that his surgeries are inevitable and his kidneys aren't going to fix themselves, I've been trying to mentally prepare. Preston has come so far this year already and I know that we will have a few bumps in the road but it (hopefully) will not be as trying as the as trying as this past year.

So everyone, hug your babies tight....no matter how big/old they are, count your blessings, live every day to the fullest, and just ENJOY the ride.......MERRY CHRISTMAS!

Reflections

It's getting to be Christmas and I have a lot to reflect back on this past year.  A lot of wonderful....a lot of not so wonderful, but overall a TON to be thankful for!

Tyler last night said, "I guess I can finally settle into the idea that we CAN have Christmas this year." Here it is December 14th and we just put up the tree, although it still is undecorated, the lights went up on the house last night, and we're finally feeling like we can let a little guard down to celebrate the season.  We've been so gun shy to do the normal things in life because we're so scared that at any given moment we could end up back in the hospital for the next round of........

The original plan was that Preston would likely have his nephrectomy in November/December and then move forward with the transplant around February/March.  I think that he has shocked the doctors that he has been able to maintain as long as he has on his albumin/lasix infusions without the risky complications that go with.  We hold our breath daily and know the risks of infection, blood clots, etc.  He seems to be doing so well that it's hard to want to move forward with the kidney removal.  So because we were kind of planning to spend our Holiday's in the hospital, it almost doesn't feel really yet that it's really Christmas.

We've become fans of a few other Parents' blogs that have babies with CNS as well.  The one family with twins now have both children transplanted!  It's been a little silent celebration for us that their second baby is now with his new kidney and past one really tall hurdle.  We've never met, or communicated with this family, and they may never know how HUGE of a help they have been for us in knowing that there are success stories.  I admire their strength in having two babies to care for, both in different stages and having such different medical needs. I am very thankful to only have one baby with this condition.

So everyone asks, "How's Preston Doing?"  I feel like I have the same canned speech in telling everyone how he's doing, and I hope people don't mistake that for an unwillingness to share or that I'm being impersonal.  I basically tell them that he's growing well, eating like a champ, loves to read like crazy, loves his Dad like crazy, nearing his weight goal in needing to be 22lbs to be prepared for the surgery.  I don't go into huge detail, because I also don't want to seem like the obsessed parent who is overly involved in their own child, but I guess that's my own insecurity?

So aside from the generic canned speech......Preston really is doing awesome.  There are some milestones that he's a bit behind in, and there's no doubt that the prematurity and the excessive time in the hospital will set him a bit behind.  He still is not eager to crawl, hates being on his stomach, we think it's because of his central IV line, he has some weakness in his right hand and arm, stiffness in his left leg attributed from his brain bleed.  Once in the sitting position, he'll sit by himself totally content for a LONG time and play with his toys, reach as far as he can sometimes falling over.  We trick him into crawling for things on the couch or bed where it's more squishy and he doesn't get as frustrated.  He's pulling to stand and wants to stand, starting to motor his feet and walking with help.  We drive our PT nuts because he's skipping milestones (like the crawling and sitting up on his own).  I know it's important that he learn to pull him self up off the ground, but right now, he just has no interest.  So more PT in helping to strengthen those extremities so that he'll be able to "toddle" on his own.

It's really hard to admit (both to myself and to other) that Preston may have some physical disabilities.  He will be getting a splint for his right hand so that we can encourage him to use both hands instead of only his left hand, and it sounds as if he will have splints for at least his right leg, if not both legs, so that while he learns to walk he can learn to use both sides symmetrically.  I know many friends and parents say that they as kids or their kids work some sort of device as children, and then grew out of them later in life.  I sure hope this is the case for P, but as we have learned, only time will tell.  I know that life is so uncertain and you never know what hand you will be dealt, but I want a few more Aces, and a few less Jokers darn it.....

So in reflecting back on this year, I'm very thankful for my time at home, my wonderful family and the support of my friends, family, and co-workers.  I'm thankful for this crazy life lesson that for some reason God has given to me, because I really do believe that I am a better person, mom, wife, sister, daughter, co-worker, boss, etc. because of it. 

So, in looking ahead, my goal for the future is to blog more not only to keep you all in the loop, but to document this journey for Preston so that he can later see how he started as the tiny 4lb 12oz super sick baby and became the awesome man that I know he will someday become.

Relinquish the Control

My mind has been the biggest tornado lately. So much on my mind and so much is still uncertain of what lies ahead for Preston. Work has been crazy busy and thanks to Chelsie, our friend and new hire, we've been able to keep up with most everything and even continued to take on new properties with the management company. I constantly think to myself, am I crazy? Only a crazy person would be taking on additional, new business right now. Preston has not only been a gift, but a true lesson learned for me. And that lesson is: "Relinquish the Control." Tyler's always told me that I have an issue delegating and deep down I've known he was right, but I had no idea how much of a work hoarder I really am/(was?...) Well I have had to get over my habit of work hoarding and I can honestly say now that delegating is getting easier. I have learned to depend on people to help me with things that I never thought I would need help with....even down to the grocery shopping. For the last few years Tyler and I have been on the verge of needing assistance at work with the real estate and property management. Our situation with Preston has forced us...but in a good way...to just let go to the things we cannot control.

We have two appointments coming up in the next few weeks that will likely be an indicator of what's next and we may even be able to tentatively plan for his surgeries, but then again I don't know that for sure and maybe I'm just hoping for some answers. I would love to just get this whole transplant thing done and over so that we can put this chapter to bed. I know that we will never be truly done with doctors and but it will be so nice to see the day when we have an annual, or even a twice annual trip to the nephrologist...

Next week we will be down at LPCH at Stanford for some clinic appointments with the nephrologist, neurologist, endocrinologist. At lease we can try to clump them together to minimize trips. We'll probably end up staying two nights because our appointments are spread out beginning at 8am and ending late in the afternoon. With a 5 hour drive on each side it's impossible to accomplish in one day.

Holy smokes a month has passed since first drafting this blog post and the above is now old info, but still not a lot is unchanged.  Rather than deleting my thoughts I'll post this blog and move forward with the next......

To Pump?.....Or not to Pump???? uuug....

Preston's 7 months old now and on Monday he was 16lbs. 13oz. and doing awesome!  Growing great and status quo at this point and we've been able to keep him healthy and at home for the time being.  He's eating like a champ and loves his butternut squash and cereal, but is not too fond of the sweet stuff.  He must be his mama's kid lovin' the savory foods already!

Now that Preston is 7 months old and working on the solids he's decided that he's done nursing.  Actually, he's been done nearly a month.  Once his teeth cut through he was immediately self weaned.  It was exciting and heartbreaking for me all at the same time.  I had worked SO HARD to be able to have that connection with Preston.

Right when Preston was born, he was not a very strong eater.  For the first 2 months in the hospital, I was not encouraged to breast feed hardly at all.  Everything was all about production in making sure he was taking in the proper amount of mL per kg, which he rarely was able to meet his goals.  Even to this day Tyler and I keep track of everything he eats, the amount of protein he gets, etc.  A little on the obesessive side, yeah probably.  But, we were also told that his trends would be a good indication of his well being and that if we start to see a drastic change that it might be an indication of a potential problem.  While still in the NICU, I was able to nurse him maybe once or twice a day, but it was never comfortable with a crappy rocking chair with wooden arms and no cushion and a curtain pulled around the isolette and the staff poking their heads in every few minutes to make sure everything was okay.  It was hardly private or an nowhere near a neutering feeling.  But for some reason I didn't give up.

Because Preston wasn't consuming enough calories the doctors decided that he would need his bottles fortified.  I had been pumping right from the very beginning, but now this meant that nearly all of his feedings would be by bottle so that he would benefit from the higher calorie content.  It would have been so easy to give up and give him formula from this point forward.  Pumping every three hours is not easy!  It's miserable waking up in the middle of the night and poor Tyler, while I'm pumping he's giving Preston a bottle, so we're both up every few hours.

After the readmission when it was found that Preston had congenital nephrotic syndrome, they then were able to identify that he was not only lacking in calories but also protein because his kidneys were spilling all of the nutrients and immunities.  Knowing this, the Docs then recommended fortifying his milk to 26 calories/oz (normal breast milk and formula is 20cal/oz) and also he was in dire need of an oral protein supplement since he was retaining almost zero protein in his blood.  So now it was an absolute necessity. Weather I liked it or not, my kid was going to have a super fortified bottle and it was going to have a bunch of powdered formula and protein powder as well.  Breast feeding where my milk was absent of the needed protein and calories was almost not an option.  For some reason or another (call me crazy?) I continued to pump and fortify my milk.

I think part of me knew that he could tolerate the fortified breast milk and with his track record in health issues, I was scared to death to rock his little world by going to a 100% formula diet, for fear of "what if".  I know ultimately he would have been fine. I know babies get immunities from breast milk and I guess that I felt that if I could provide him with anything extra that would possibly help keep him healthy, then dammit, I better at least try.

After about 4 months of pumping and only breast feeding maybe once or twice a day, the milk production was extremely lagging, to the point of not being enough.  We were forced to start using more formula.  I tried everything to get the production back up. I pumped every 1-2 hours, drank the nasty licorice flavored mother's milk tea, avoided all of the foods you're supposed to avoid when breast feeding, took fenugreek supplements, which only made me smell like a waffle house and I had the aroma of maple syrup oozing out my pores....which sometimes was appetizing, other times just annoying.

Finally at 6 months I'm kicking myself daily, asking myself, do I keep pumping?  Am I really doing that much good in providing breast milk any longer?  I know Preston is tolerating formula now so switching him would be "fine"....will he be missing out on needed immunities?  I pressed forward for another month and kept telling myself that I'll keep going till 7 months and see where things stand.

7 months this week.....All week I've been tapering down the pumping....man this isn't easy.  I now know that I probably am having the hardest time weaning myself and not Preston. Preston has self weaned and has made is clear, he's done nursing.  I guess my predicament now is all in my head.  Being that congenital nephrotic syndrome is a genetic trait and that it's very likely (over a 25% likelihood) that any other children that Tyler and I might have could possibly also be affected, I know that the likelihood of us having more children of our own is pretty slim.  It's my head telling me that I may never get the opportunity to nurse another baby again.  I already felt robbed that I didn't really get the "full experience" in bonding with Preston like other moms would with their babies.  That's not to say that I haven't bonded.  Being that we've been home with him all the time, I've been so lucky to spend a ton of time and glad that our careers can (somewhat) afford us the time and flexibility to be here as we need to. So lesson learned, don't take the little things for granted.  Someone else may not be as lucky as you and so you count every single blessing.

I'm sure this post shares a side of me that many of you probably have never expected. I know that this blog is mostly to update everyone on Preston's condition, but couldn't help but think this is something about me that I'd like to share as well.  It's really hard when people ask me "how are you doing??" and my answer is always generic "doing pretty darn good....". It's not that I don't want to go into detail, but it's just tough, and I don't want to make people walk away and think to themselves, "geez, I'm sorry I asked!"  I figure with this post I can somewhat share a bit of what I have experienced more on the personal side.  I truly appreciate everyone's concern for how things are going with us and the well being of our family.  I can't wait to be able to share our experiences with Preston in person with everyone and not through a blog, but in the mean time, Thanks again for the love and support.

So.....before you all start to worry about me too much with all of this seriousness.....

Now that I will no longer be breast feeding/pumping, I have one last thing to say.    Good bye "Double D's"  it's time to make way for the "tube sock twins".

Vici

6 months old and 15lbs 14oz!

I know everyone would love an update on progress this far, and this post is really overdue. We are adjusting to our lifestyle at home with Preston and are happy to say we have a "routine". After all a routine means we've been home long enough to enjoy or little man and watch him grow like a normal baby. Preston has been successfully growing. Since he loses all of his protein, one of the primary concerns is that he potentially wouldn't thrive and gain weight at a rate that is needed. I'm glad to say that it appears that he will meet his 10 kilo goal (22lbs) in November if he continues to grow at the same rate that he has been and by his percentile growth chart. So he's doing awesome and has chunky butt dimples in his legs and he looks and acts like a happy baby! 

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.

Again, I want to say a BIG HUGE THANK YOU to everyone that has helped us along the way.  Every bit is so appreciated. The prayers, the meals, The help with work, the help at home by family members, the cards and to all of our friends that have rallied and raised money for our expenses.  You're all amazing, and the three of us are so glad that we don't have to go this journey alone.

An airplane ride and 5 days in the hospital for bronchitis??

So, I know it sounds silly and everyone has been asking what's up with Preston and what led to his hospitalization this last week. When I tell them he had bronchitis I see this look and a raised eyebrow nearly in disbelief. It's even hard for me to believe how something that is a "routine illness" that so many people can do easily overcome, could possibly be so devastating to cause nearly a weeks long stay in the hospital. It was a combination of the bronchitis and the congenital nephrotic syndrome that was the problem.

As I mentioned previously, CNS is when your kidneys have porous gaps that allow the spilling of all of the protein in the body. Virtually no protein remains in Preston's body and he literally pees it all out. Included in the protein are antibodies that would help to fight off sicknesses and gain immunities to bacteria. This is one reason that Preston is so at risk for infection and illness. In addition, Preston is also on a medication that suppresses his immune system further. This specific drug is given to transplant patients to help the body avoid rejection if the new organ. While Preston has not yet had a transplant, the drug is being used in combination with some other drugs int he attempt to to reduce his kidney function so that he will hopefully lose less protein. We learned this is called a "medical nephrectomy".

So because he has CNS and has a SUPER compromised immune system, he got some kind of cootie that caused the bronchitis. He was really congested over the memorial day weekend so we kept an eye on him through the weekend.

On top of the congestion, weekends are Preston's "days off" from his IV infusion of albumin (a protein blood derivative) and generally over the weekend he gets a little swollen with excess fluid that his body can't shed on his own and so it was a combination of the bronchitis and retained fluid that then led him to....respiratory distress....dammit.

Tuesday morning we could tell he was overall just generally uncomfortable and struggling to breath. So to the doc we went. Our Ped was still out for the holiday weekend but the Dr on call had some general knowledge of CNS to know that it's not something that could be treated locally in Red Bluff because things could go from bad to worse real fast. He ordered up an x ray to rule out pneumonia but still recommended a transfer to Stanford where Preston's nephrologist is located so he could be monitored.

Of course they wouldn't let me fly with him so Tyler and I drove down to Palo Alto with an empty coarsest in the back seat. It was a LONG ride down. Preston had beat us there and his flight was only about 2 hours and we were walking down the hall and could hear our baby screaming. We followed the cry to his room to find one starving kiddo. Struggling to breath and with all of his congestion, he hadn't been eating well so it was music to my ears to hear the hungry cry.

While we were there he was tested for all kinds of infections and blood work ups and tab swabs. All if which were mostly inconclusive so it was determined to likely be a virus. I never thought I'd be happy to hear it was just a virus. Dreading an infection, we were told that Preston will only have 2 or maybe 3 strikes (illness). If he has multiple strikes against him, he will need a nephrectomy and will have to go on peritoneal dialysis. With one strike already against P when he had sepsis, I was in fear that this would be the final straw, and that we would be back in the hospital another month for the kidney removal.

Luckily we escaped and the doc said that he'll let it slide because it's normal kid stuff and not a more serious infection. After three days in a row of his infusions, Preston was back to baseline (in that he wasn't super swollen with excess fluid) so he was able to breath better and the cough and crud was finally dissipating.

So after 5 days were home again. While down there we certainly got a taste of reality of what it will be like when the time comes for him to have the surgery to go on dialysis and then again for the transplant. We learned just how serious this is, not that we didn't already know. We saw many transplant patients at the hospital and they have to wear masks and respirators to prevent them from breathing in germs that would cause illness and rejection. If I didn't think I was a germ freak already, now I know I'll be an even bigger germaphobe.

I've never seen so many BEAUTIFUL children as I saw this last week. It was obvious many were undergoing cancer treatments and probably other treatments that I cannot even fathom. It was like watching a St. Judes children's hospital commercial and feeling the reality and the seriousness of having a sick child and then realizing...my baby is one of those sick kids.

So while I'm happy and VERY THANKFUL to be home, I'm also very thankful to have had such an awesome facility and some great Doctors at out service. I felt like if we had to be there, it was a good practice round to get our toe in the water and feel out how life will be at that hospital for when the time comes for the next step. I'm just hoping that next step is when he's 22 lbs and over 1 year old, which is the target that he must reach to receive the transplant.

We had a fabulous time documenting Preston's homecoming with We Shoot Ya Photography.  Thanks Danny and Dianne for everything! You do amazing work and are two of the most fun, kind and talented people I know! You're a true asset to this little town.  Thank you!

Here is the link for our pictures:

Preston Miranda Proof Set

Preston Miranda Slideshow

Our new found routine

There wasn't a single day that Preston was hospitalized that we didn't spend 12 or more hours a day at his bedside. Our typical routine started at 7am we would break for lunch and then come back and stay until 10-11ish nightly. So as you can see we pretty much took up residency at the bedside. We would take shifts and one of us would spend a few hours back at the Ronald McDonald house to work and catch up on phone calls. We had a full office setup back at "camp" so that we could try to work and have some sense of normality to our lives. Thank goodness we are both in real estate and have so much flexibility in our careers. We couldn't have done it though without the HUGE support and understanding of Ken and Melina, Stephanie (I still owe you some cocktails and a lot of them!!!), Max, Jen, and Joseph. If I didn't feel it before, I certainly do now feel like you all are a true extension of my family!

Tyler and I have always been a little on the workaholic side. We knew once Preston arrived it would be different, but not to this extent! We thought that we would be able to have him at work a day or two a week while he was tiny and throw him on the Moby wrap and wear him while at the office....I guess you just can make plans too far in advanced!

Boy has life changed! We're now not only working full time in real estate and Property Management, one of us is always at home with Preston due to his immunity so we're stay at home mom/dad trading off work days, and on top of that we feel like we're full time care providers having to do more than a "normal parent" would do. I know there are two of us but feeling like we now have three full time positions is really tricky.  Thank goodness for everyone that has helped us tremendously with the cooking, cleaning, housework and for our business too.

Managing daily medicines in itself is quite a job with 16 different doses throughout the day of oral medications, shots a few days a week, IV infusions 3 days a week. The phone calls ........holy smokes...... 4 different pharmacies for medications and supplies, nurse case managers for insurance companies, the home health nursing agency, and several doctors to report to throughout the week. If I didn't feel like I was going crazy before, I sure do now!

I just thought I would kind of share a little bit of our new found home/work life so that everyone knows what our new routine entails.  I promise this blog will soon be less about us and more about Preston.  I just thought this would help to answer everyone's question of "How are you doing?" aside from my normal response of "things are going okay".

A LONG Overdue Thank You

Being in the hospital for as long as we were, we really didn't get the proper opportunity to thank the staff at UC Davis for their kindness since we were SOOOO anxious to go home. For several days before going home we knew it was likely that we may get to come home, but we didn't want to jinx ourselves by saying our goodbyes too soon....after all they scheduled our discharge date for a Friday the 13th. When we finally were discharged we were so hot to be out of there, looking back I wish that we would have taken the time to appreciate one final time all of those that helped Preston along the way. I hope to now express my thanks publicly so that they all know how much we really care.

First- our primary nurse and long time Red Bluff friend, Tracy. It was YOU that made us feel like we were not in a foreign land. Your compassion for Preston and willingness to be his primary nurse was awesome! We looked forward to the nights that we knew you would be on and knew that we could sleep easy while he was in your care! You went above and beyond in helping us schedule Preston's medications so that we weren't lost when we got home and that was such a huge, huge help since his daily schedule is almost a full time job in itself!

A few other members of the nursing staff that I'd like to thank and I'm sorry if I missed you I wish I would have written down the names if each and every one of you. I will however always remember the faces of everyone!
Marin- Thanks for always having a smile and being so kind. I always looked forward to seeing you and for doing Preston's hearing screening (a half dozen times, lol).  I'll always remember you, after all I wanted Preston's name to be Marin!

Lori- Thanks for being Preston's daytime primary nurse, and thank you so much for teaching us the ins and outs of giving the infusion.  Your teaching helped us feel more comfortable when we got home

Carrie- Thanks for your knowledge and expertise!  Many times you were the go to for the tough questions and we appreciate your support.

Jim- You were with us during some of the TOUGHEST days and you saw a side of me and my emotions that not even many of  my closest friend have ever seen.   You're an awesome nurse and glad that you were with Preston one-on-one.  It's clear you love your job and your great at it.  P.S.....I have a sister that's a nurse and she's single.....I'm not sure she'll be thrilled with me posting that, but what the hell I just thought I'd throw it out there.

Angie-  Thanks for being an excellent IV starter.  I always dreaded IV starts because I knew they would be tough, but you  nailed them every time. I also love your bedside tidyness!

Jill- so easy to remember, you share my sisters name. Always compassionate

Ebony- Thanks for landing the PICC line.  After four previous attempts by others you were finally able to nail it so that he would have less IV pokes!

Katerina- Thanks for being patient with all of our 500 questions and always finding the answers to them.

Sharon- Thanks for always bringing a smile in the room and thanks for the pictures too.  ps...I love your son's name :o)

Christian- Thanks for helping to lighten the mood.  Even if you were just breaking someone for a few minutes we knew you would always give us a chuckle about something.

Krista- Thanks for always making me feel better.  I don't think I'd be able to burp or swaddle a baby without your guidance. I loved hearing about all of your culinary delights too.

Val- You're an awesome lady!  I'm thinking an honorary Grandma :o)  I hope I see you again!!!

I know there are soooo many others on the nursing staff, and if I forgot you it's not because your work went unnoticed, it's simply due to my lack of sleep and energy during those 3 months.  I tried to write down names, but failed to catch many!  So if I didn't name you specifically, THANK YOU!!!

Ward Clerks- I'm not sure what that department would do without you!  Mike, thanks for being so kind in showing us the ropes of the NICU at 2am on the first night that we arrived.  Ramey, you run circles around that place and it's apparent that everyone knows they can count on you for EVERYTHING! Anita, you are one sweet lady! 

The Attending Doctors, Residents and Fellows, there are so many of you but thank you for being so patient with us through all of our questions and again the second time we asked those same questions. We know you aren't used to having needy parents at the bedside for 12 hours a day, and we appreciate that you have not only cared for our son in treating his symptoms, helping to determine a diagnosis as well as educating us on what Preston's needs are and will be in the near and distant future. THANK YOU!

Just pictures

I have tons of requests for pictures. Enough of the medical garbage for now, here are some of my faves. Our one and only outing so far (aside from doctors offices) was to Weshoot ya's studio to see Danny and Dianne. I hope to post a link to their photos as soon as its up :)