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.

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!!

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! 

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!!

Birthday Pictures

Stephen's birthday was a good time had by all!  We celebrated his actual birthday on the 4th with cake and pizza with Nonnie and Papa (Billy's parent's) and then had a fire truck birthday party on Saturday with lots of family and friends and all of Stephen's buddies.  Despite the miserable weather, it was a really nice day and the best part of all…the local fire station came by with a fire truck for the kids to see!!!  They were all so excited and it was definitely the highlight of the day!!  That and the cool F-150 power wheels truck Stephen got for his birthday from Nonnie and Poppa!

First Day of School

Today marks another big milestone for Stephen; his first day of school!!!  Stephen started daycare/preschool for the very first time!  It's been quite a challenge getting to this day, and I'm still a bit nervous about the whole g-tube feeding thing is going to work at school, but the hardest part is over with....the drop-off.  And I think it went really well (minus the fact our garage door was frozen shut this morning)!

We've been talking about going to school for weeks, and we visited a few times, so Stephen was well aware he was going today and that he would be there all day.  But of course, on the morning of the big day, someone woke up on the wrong side of the bed and didn't want to go.  As I pulled him out of his car seat at school he even said, "Mommy, I don't want to get out of the car."  Ugh.  That's like a dagger straight through the chest!  But once we got inside and everyone asked him if he wanted to go play, he walked down the hall and into his classroom.

Once we got into his class, he became pretty hesitant and wanted me to pick him up, but his teacher came right over, scooped him up, I hung up his bookbag and coat, gave him a hug and kiss and Bill ushered me out the door.  Thankfully, he waved to us and said, "Bye Mommy and Daddy" with a big smile, so I felt good about our chances for no tears.

It's now 11:40 AM and I haven't gotten a phone call, so I'm assuming all is good!  I do have to go back shortly and give him his tube feed, so I'll be able to check on him, but honestly, I think he'd do better if I didn't go.  But, he needs those fluids to keep his kidney happy, so I don't really have a choice.  I'm hoping that once he gets acclimated to school and napping at school and his teachers feel comfortable enough, they'll be able to give him his feed during nap time.  Or even better, he starts eating and drinking more and there will be no need for the stinkin' g-tube at all!

For the first two weeks, Stephen will be at school every day, all day, and then after that we'll taper down to either two or three full days (depending on my work schedule and how he does).  But all-in-all it's just awesome knowing Stephen's healthy enough and so far beyond all of his delays that plagued him for over two years that he can be at school with the other kids his age!!
 

  

3 years old!!!!!

So Lindsey and I were just sitting here, on the eve of Stephen's 3rd birthday, discussing what we were doing 3 yrs ago today.    Ironically enough we were set to meet with our OB the next day (jan 4 2011) and we had decided to tell her one way or the other this baby needs to come out.   We needed to know one way or the other what was going to happen.  We were so scared, so unsure of what was ahead of us.    So Lindsey and I are talking about this tonight, and as we are talking, Stephen came flying around the corner chasing our dog Mabel with his dump truck (a hourly occurrence in our house), and the last 3 years came rushing back to me all at once.  We live this journey with our son, and I sometimes find myself having to be reminded of things that happened, almost as if I had only read about them and not actually lived them   It was as if everything Stephen went through, everything we went through, everything our friends and family went through was just a dream.  As if this perfectly "normal" 3 yr old was never sick...  Well, unfortunately we all know it wasn't a dream, and he was sick, and he did go through a lot, but everything he went through, everything we went through is all worth it when he goes flying by with his dump truck, trying to run over the dog.    Everything he went through and we went through is worth it when he stands at the window waiting for me to come home from work, then waives at me to "come in da house daddy".  Everything he went through and everything we went through is worth it, when I see the joy in his grandparents eyes when he runs and gives them each a hug and kiss, and makes them feel like they are the most wonderful people he has ever met.  Everything he went through and everything we went through is worth it when you see him chasing after his two beautiful little cousins (Norah and Chloe).   Everything he went through and everything we went through is worth it when, this past weekend he played all day with his buddies "baby g" , caroline, and charlie. (Greg and Ashley Callen's kids) in the park , and not once was looking over his shoulder for mom and dad.  Everything is worth it when, as I am typing this I look over and Stephen and Linds are chilling on the couch watching tv together.   

I need to clarify that when I say "we" I am of course describing Lindsey and myself, but in reality I am describing everyone in our lives who have lived through his journey with us.   We are extremely fortunate people, who have had unbelievable kindness shown to our family.    I would invite everyone who has followed along with Stephen's Journey to wish him a very happy and healthy birthday tomorrow, and also take a second to toast yourself as well, as you are all part of this special boy's journey.

Lastly I need to make special mention to Stephen's angel on earth, the wonderful and beautiful Kristin Freeman, and her wonderful and supportive family (Matty, Cameryn, Cailyn ,Cassidy).   Without her, and her family's love and support, I don't know where we would be.  I won't go on and on about Kristin because I know she hates the attention, but we are kissing our little boy tonight in large part due to her and as we celebrate his birthday, we celebrate you and the gift you gave us.

Happy Birthday Little Man

Love Daddy