Friday, April 11, 2014

Beautiful Day Today

Just got back from a trip to a local park/farm this morning and wanted to share some pictures. Stephen LOVES Frying Pan Park Farm and the second we pulled in the parking lot he started shouting "Mommy, get me out!" It's such a gorgeous day and there were a lot of baby animals to see. Hope everyone had a wonderful weekend!

Tuesday, April 8, 2014

Health Update

I have some new news about Stephen's blood work/labs that I thought I would share.  Late last week, CHOP got the final results of Stephen's viral studies from our visit on March 26th, and it turns out that Stephen has picked up cytomegalovirus (CMV).  CMV is one of the big viruses that doctors monitor before transplant and then closely after transplant.  It's also one of the viruses that are checked in the donor prior to transplant.  It's a common virus that is spread through the community and shows itself as a common cold, cough, or fever, but for transplant patients who are under a lot of immune suppression, it can cause serious damage to the transplanted organ.  For 6 months post-transplant, while Stephen was under a lot of immune suppression, he was taking a medication called Valcyte, which prevented CMV.  And CMV, along with EBV, is checked routinely at transplant clinic (if you remember, Stephen got EBV pre-transplant and spent some time in the hospital fighting it off and it ultimately caused his transplant to be re-scheduled at the last minute). 

Thankfully, when it was really critical right after transplant, Stephen did not get CMV, but, his blood work showed copies of the virus this last time.  They're low numbers at this time, which we're happy about and for right now, the only course of action is to stop his CellCept and start the Valcyte again and check his numbers at the next visit.  So, we're just swapping one medication for another and hoping that his numbers will decline in a few weeks.

I've spoken with the transplant coordinator and doctor at length about this because the acronym "CMV" is a scary one, but it sounds like valcyte is a great treatment and if for some reason, it doesn't work, they can administer an IV medication as an infusion (one he's had in the past for other infections).  But Stephen seems to find away to kick these viruses to the curb without too much hassle.  He's kicked EBVs butt and BKs butt, so I don't think CMV will be any different.


Wednesday, March 26, 2014

Tests Done and HOME!

This was us today all smiles as we got back in the car (packed full with days of clothes, toys and supplies) at CHOP and headed home:

It was an early morning drive to Philly at 5am, but by 11am, Stephen had done blood work, had a kidney ultrasound, and was seen by the nurse practioner, nephrologist and psychology. It was a busy, long morning, but by the end, they all determined, that there was no reason to keep him and we could go home. Hallelujah!! 

As I thought, his creatinine wasn't as high when we did it today at CHOP (for some weird reason, it's always higher at the lab here in Virginia) and the ultrasound didn't show any blockages or unusual things with the kidney. His red and white blood cell counts are low and the lab noted his red blood cells are enlarged, but we/they think it's all related to the cellcept; one of Stephen's major anti-rejection medications. He's always had issues with the cellcept, actually. Last Summer, after transplant, it made his white cell count incredibly low. Eventually, he stopped taking it when he became positive for the BK virus, but once he was negative for BK, they put him back on it. And it's back to causing issues. So, over the next few weeks, we'll do some more blood work and talk about using a different test for kidney function, instead of creatinine, and possibly start a new medication in place of CellCept.  

But ultimately, the good news is that we are home and Stephen did so great today with all of his tests! Personally, I think the doctors also just wanted to put their eyes on him and see that he truly is looking and acting like himself.

You tell me, does this look like a sick little boy?! I sure don't think so!! (He was so proud of his Spring hat he made at school!)

Tuesday, March 25, 2014

Slightly Unexpected

Well, we have an unexpected/unplanned road trip to Philadelphia on the horizon. Stephen's lab work from last Friday was not good. His creatinine is high (double what it was a few weeks ago), and his hemoglobin and white blood cell counts are low. So the doctors asked us to hydrate him really well and repeat the bloodwork this morning.

The actual blood draw went great! Stephen was given a couple of tasks to help out the phlebotomist, and he was so distracted and busy chatting away with all of the ladies in the room, that there weren't any screams or tears! They did an amazing job!!

But two hours later, I was having the dreaded "bad lab results" call with his nephrologist at CHOP. Basically, his red and white blood counts are trending downward and his creatinine is holding steady at 0.6, so they want to admit him tonight at CHOP to hydrate him, do labs in the morning and an ultrasound of the kidney.

Knowing about the issues he's been having lately with anxiety, I was able to get the doctors to agree to allow me to hydrate him overnight at home through his gtube and to do bloodwork and an ultrasound outpatient tomorrow at CHOP. So even though it will be a 4am wake-up call tomorrow, at least we were able to buy ourselves one more night at home and a little more time to get our ducks in a row with work and packing before leaving for Philly. We are definitely going to pack a bag for a couple of nights (we've been down this road many times!), but hopefully, Mr. Stephen's kidney will cooperate and we can come up with an outpatient plan of care and avoid a hospital admission all together.  But I guess we shall see what tomorrow brings.

Sunday, March 23, 2014

March Happenings

While having dinner last night with some special friends, it was kindly brought to my attention (wink wink) that I haven't blogged since February 27th….oopsy-daisy!!  And I kinda sorta made a statement that I haven't really had much positive to say since someone has been a big stinker lately in the behavior department.  It's a running joke in our house, but in reality, not a whole lot has been happening with the little guy (in the exciting department).  He did get better from his fever, then he got a head cold, and a little GI bug, and then the cold settled into a cough.  So we made a couple more trips to the pediatrician and one trip up to CHOP for his monthly transplant clinic a few weeks ago.

The trip to CHOP went ok, but his lab work was a little all over the place.  His creatinine was up, his white blood cell count down, and some of his other electrolytes were also out of whack.  But everyone thought it might have been attributed to the virus he was getting over and being a little dehydrated since he was having trouble keeping his tube feeds down.  So, they didn't make any changes to his medications, but asked me to take him for some re-peat bloodwork at home.  It took me a  little longer to get him to the lab because he was still fighting some kind of bug and I wanted to make sure he was super hydrated when I took him for labs.  So we finally just did that this past Friday and we'll hopefully get those results on Monday.  I'm really hoping we get good numbers this time, because I fear if we don't, CHOP will ask us to bring him to the hospital for a "tweak" with an overnight stay.  And I'm avoiding that like the plague!!!

But in all honestly, we have been dealing with some behavioral stuff lately.  Most of it, I'd say 90% of it, falls within the typical "terrible 3's" category; but some of it does not.  After talking with Stephen's pediatrician, we're pretty sure he's got a bit of post traumatic stress disorder (PTSD) stemming from all of the hospitalizations, procedures, surgeries and doctor visits he's endured.  It now rears its ugly head when we go into a doctor's office or hospital, or for example this past week when I took him for his yearly bone-age study (hand/wrist X-ray).  He panicked when I parked the car and when we walked into the office, but then calmed down while in the waiting room (thank you to Apple for inventing the iPad…it's a serious God send!).  But freaked out when the x-ray technician came out to get us and he was dressed in scrubs.  However, when we walked into the X-ray room and he saw the machine and the table….it was all over.  I'm talking throwing punches, screaming, wailing, and just losing it.  And he was fully aware that all it was was a picture of his hand…we even practiced slamming his hand down on the table like a hand print.  But it didn't matter.  He felt threatened and that was it.  He's always had some form of this and always while hospitalized, but it's gotten exponentially worse over the past 1-2 months.  And the same feeling he's having when it comes to medical-related things, is spilling over into normal life.  Right now it's the bath tub, whereas just a few weeks ago, the bathtub was fun.  Now, it's threatening and scary.  Any time he feels threatened or scared or unsure, the panic and anxiety takes over.  I know this isn't unusual for kids who have been through a lot medically, but we don't want him to feel scared in situations where there isn't anything to be scared of and we certainly don't want to do anything to make it worse.  And hopefully by working through this now, it will help to make the transition to school easier down the road.  So, I'm working with his doctors and the medical staff to come up with some sort of plan/resources for us.

So…that's what we've been up to!! :)  Oh that, and trying to buy a house.  We've finally, after months and months of looking and debating, have decided to purchase the home we've been renting for the past year.  It’s nice to have finally made a decision and to start putting roots down and making our home really our own.  We close at the end of next month and then our weekends will be filled with knocking out those home improvement projects!! Fun fun!!

Goofing around at the Famous 4th Street Deli in Philly.
Working on wearing big boy undies.  It's VERY slow going.  Stephen will love me for this one when he's 16!! :)

Breakfast of champions!!

Best part of the day is when Daddy comes home and Stephen get's to pull his car into the driveway.

Stephen was sampling cupcakes last night after we got home from dinner.  Thank you Cheryl and Kathy for a wonderful evening and for the delicious treats!!  Mabel was clearly DYING to get her paws on them!!

Thursday, February 27, 2014

Under the Weather

Well I guess we weren't destined to escape the winter without an illness this year. Boo! Stephen has had a fever since Tuesday morning with no end in sight and the poor little guy is completely miserable (although I do like the extra cuddles). I'll be taking him back to his pediatrician tomorrow morning to see if there's anything else we can do; aside from taking him to the ER for blood work, cultures and IV fluids. And we are obviously desperately trying to avoid that scene! It started Tuesday morning with a low-grade fever and has morphed into a full-blown fever hovering between 103 and 104 for the past 48 hours. 

I got smacked with the stomach flu on Monday, so Bill took him to the doctor on Tuesday with Nannie and the doctor basically said we had to ride it out, but now that it's almost three days later and he's gotten worse, I'm pretty worried. And this will actually be our third visit to the pediatrician in a week and  a half. Last Tuesday he was at the doctors for being sent home from daycare with tummy issues! When it rains, it sure does pour! And we'll be heading to Philly on Monday for transplant clinic at CHOP. Doctors, doctors, doctors.

So if you wouldn't mind, please send some positive vibes and prayers to Stephen that he can kick this "bugs" butt and stay out of the hospital! Hopefully this is just a normal "sick kid" thing and nothing kidney/transplant related.

On a positive note though, Bill and I spent a few days last week in sunny California while Stephen had an epic sleepover at Nannie and Papa's :) Bill received a sales award for work and we were treated to a few days in Palm Springs. It was pure heaven!! We went the past three years to this event, but this was truly the first time we actually really relaxed and completely enjoyed ourselves without the constant worry of illnesses, infections, dialysis and transplant. Even with the stomach but hitting me like a freight train on the flight home, it was a totally awesome trip! 

Tuesday, February 11, 2014

One Month In

Stephen's now one month into daycare/preschool and I'm sure some of you have been wondering how it's going (especially since I haven't posted anything…sorry!).  Well….it's not a whole lot different today than it was the first day Stephen went to school.  He hates being dropped off at school.  It's so sad because once he's there, he usually has a good day and tells us at night all about the things he did at school and talks about all his little friends at school and how much he likes his teachers.  But as soon as he wakes up in the morning and the whole time we're getting him ready and the car ride over to school, there are tears and constant whining, "I don't want to go to school." So it's a little frustrating to have the child that cries every time you drop them off at school, but it's comforting to know that once he's there he has a pretty good day and always takes a nap; which is awesome.  And, best of all, his teachers are doing his g-tube feed once a day during nap time, and there haven't been any glitches with that yet.  

Aside from going to school though, our greatest challenge right now has been the "terrible 3's!"  It's hit us like a HUGE wrecking ball!!  Between the tantrums and the "no's" and the defiance and being unable to share with other kids his age (oh and let's not forget the little baby he refused to share with at the library yesterday which resulted in a giant tantrum…that wasn't embarrassing at all), we've had some challenging moments to say the least.  But I guess all we can do it stay consistent with discipline and hope this faze is over quick!!  One of things that has reared it's ugly head since school started (I think) is Stephen having feelings of being abandoned and almost high anxiety in certain situations.  We'll be out running errands or trying to grab a quick bit to eat, or even last week at the Natural History Museum in the butterfly garden, and he'll instantly start saying, "I want to go home." On repeat, over and over and over.  And if we don't go, you can see the anxiety starting to build up and panic setting in.  It's one of those weird things that you think only your child does and then you start to worry that it will never get better and "oh my god, what do we do?" kind of thing.  And does this stem from all the traumatic stuff he's been through?  And what's going to happen when he goes to kindergarten and has to ride the school bus?  I'm just hoping this doesn't last more than a few months, because I might just go insane!!  

But aside from the "terrible 3's" challenges, his health has been fantastic!  The viral studies that came back from our most recent trip to CHOP, indicate that Stephen is now negative for the BK virus.  If you remember, Stephen became positive for BK virus, a virus that attacks the kidney, back in June, prompting him to be admitted back to CHOP and a biopsy done to check for rejection.  Thankfully, there was no rejection, but he had to be taken off of one of his immunosuppressant drugs, CellCept, and put on a different cocktail of drugs to help combat the virus.  It's taken all these months, but he's now negative!  So at the end of this week, we'll stop one drug (leflunomide) and re-start the CellCept.  I'm a little nervous, because he also had a some serious issues with keeping his white blood cell count up while on the CellCept, but CellCept provides much better protection against things like germs at school than the leflunomide.  Plus, the leflunomide doesn't come in liquid form, so we've been crushing pills this whole time, which is kind of a pain in the butt.  I'm happy to be switching back to something in liquid form!

And Stephen is continuing to grow!  Still no need for growth hormone (hooray!) because he was up in both his height and weight.  I can't remember exactly, but I think he's about 2'11."  I can't keep track of the numbers, but I know he's continuing to grow out of his pants (length-wise) and his shoes.  We've gone through something like 5 pairs of shoes since transplant! Amazing!!!!

Also, just wanted to quickly point out that Valentine's Day, February 14th, is National Organ Donor Day!!!  A big shout out to Kristin, Stephen's amazing kidney donor, and everyone else who has donated or who has had a loved one (living or deceased) that has donated.  There's no better gift than saving a life!!  

Here are a few pictures from our adventures over the past couple of weeks.  I hope everyone stays warm and dry. We're gearing up for more playtime in the snow with dumpy!!