Sunday, January 30, 2011

Classic William

When this little tike isn't feeling well, he's content just to stay cuddled on matter what Mama is doing...

The Ups & Downs of the Hospital

Around Day 5 of this hospitalization, William started to experience blood pressure concerns.  There were times his BP's were in the upper 140's over 80's and 90's....high numbers even for an adult....and a definite concern for a 20-month old.  At one point, a SWAT nurse from the PICU was called to assess William's blood pressure.  She spent well over an hour checking each extremities BP, all his pulse points, manual BP's versus using the machine....poor William was just put through the BP ringer!

Another 3 days of absurd blood pressures and a consult with nephrology later, William was started on isradipine, a blood pressure reducing medication.  He responded well to the med, but still hated getting all those constant BP's taken.

~ plenty of snuggle time in the rocking chair ~

Talking on the phone is always a highlight in William's world.  He certainly enjoys it....we just feel bad for the person on the other end who has to constantly talk, despite not hearing anything but an occasional "hmmmp" and a lot of heavy breathing from William.

Oh, and did I fail to mention his love for pressing buttons.

William's birthday cake toy is a favorite and has proven time and time again to be a hospital necessity.  He's so cute when he points to who he wants to sing Happy Birthday to.

Thursday, January 27, 2011

The hospital experience

At times, it seems as though poor William is just constantly assaulted non-stop when in-patient.  There's vitals checks every 4 hours (around the clock), med administrations, visits from nurses, nursing shift changes, exams by medical students...pokes from residents...full exams by specialists....not to mention the long-awaited visits from his attending doctors.  Especially as in William's case with so many specialists on his team, our room needs a revolving doorway.  On top of all that, we still have his general daily and weekly care needs, like dressing changes.  Even when we are in-patient, I still do William's dressing changes.  He is much more comfortable with our system and frankly, the control freak I am....I am more comfortable with the arrangement too.  The nurses assist as the ""distractor/hand control role."

William's expression says it all here after a central line dressing change...

William has some nurses who he's established a special bond with.  Many staff members stop in even when they are not assigned to William for a particular shift, just to check-in, say hi....and in hopes of getting a William smile.

Another hospital band to add to the collection.

All through his dressing change, I kept William content by telling him he was going to have a tubby.  This was the afternoon that his central line clotted off.  Although it was an incredibly scary experience to think we did not have IV access for all his critical fluids and medications (and the looming threat of needing a peripheral IV)....I have to admit it was nice to have a brief break from being attached to a 4 1/2 foot IV line attached to a big, bulky, obnoxious IV pole. 

Of course, that night I also forgot that William had just undergone bilateral bone marrow aspirations in the fronts of his hip bones.  He had dressings over them, which could not get wet for 48 hours.  Thankfully, our foot stool made the perfect seat for little man to sit on and get in some water play and fun with bubbles.

Touches of home at the hospital...

My sister came to town during William's last hospitalization.  She captured some amazing photos of the hospital experience that I feel convey part of the emotions behind life in the hospital... and the ups and downs William continuously faces.

With every hospitalization comes a different room... a different view... and a slightly different room arrangement...
but we always seem to bring the same amenities from home...

my favorite touch from home ~ our picture collage on the bathroom door, always

there's of course, the not-so-welcome, but ever-so-necessary hospital accessories...

Somehow, William eventually settles in to each room.  We always bring 2 comfy blankets from home so to have one clean at all times (yes, we do LOTS of laundry while at the hospital!).  This time around, William literally sighed and reached out his arms toward his snowman blanket.  It makes you remember that sometimes, its the little things that make the greatest differences.

Saturday, January 22, 2011

Under the weather

I gotta tell you, I have two tough boys.  Nicholas is just not one to ever complain.  He's always been that way.  He doesn't complain when he's hungry, hot, cold, tired...or sick for that matter.

Even at 4 years old, he doesn't even mention a stomach ache....yup, not once...not even right before yacking at midnight!

As yucky as I'm sure his belly and body felt today with still running a fever and hardly an appetite, he never complained, but merely enjoyed a Mum Mum and cup of Pedialite while watching tv this morning.

Happy 20-Month Birthday

Last year at this time, William had recently completed his second round of chemo to shrink a massive neuroblastoma tumor consuming his abdomen.  Today, at 20-months old, he's a busy, very active, generally content and flourishing toddler.  He is literally learning new things everyday - he's definitely in a growth burst! 

These days, William is in to everything!  He totes around the same stool Nicholas used to travel the house with (and still does).  He plops it wherever he wishes and usually gets into trouble of some sort.  The other day, he was wearing a hoodie.  After splashing at the sink a bit, I told him to take off his hoodie so it wouldn't get wet.  He carefully unzipped it, tossed it to the floor and said, "Hunhhh!" (his version of "ta-da!) 
I captured his expression of full pride!

...and then he was right back to splashing in the dish water!
Will just loves his 4-Wheeler Christmas gift from Grammy and Poppie. Daddy has been cringing with William's driving skills in the house, mainly his lack of steering skills (minor problem). Just within the past few days, William has learned to drive, make his usual crash, then get off the vehicle, re-adjust and continue on his way.  Good job, buddy!

William is communicating more and more everyday.  While in the hospital last week, he thoroughly impressed the staff with his incredible awareness and knowledge of medical things.  He knows exactly what to do for blood pressure checks, he waits for the cuff to deflate and then peels off the velcro, he can thread a thermometer sleeve onto the narrow thermometer, he places the thermometer under his own arm (and will even take Mommy's temp, but he prefers a cleavage reading), William puts a stethoscope to his own heart, he finds an alcohol swab and attempts to clean his central line claves and can operate the hospital remote control incredibly well, including knowing how to call the nurse, cancel the nurse call at the wall display and can operate the lights and tv on request.

Since our discharge earlier this week, William continues to be on IV antibiotics (Zosyn) and will be through the end of January.  This means we have to run his antibiotics every 8 hours, every day, around the clock.  He is tolerating all this accessing very well and is even voluntarily laying down for us when we approach him with the supplies.  He's making attempts to say many of the items we use on a daily basis, such as "tape," "flush" and saying "ga" for "go" when I turn on the pumps.

William now loves having books read to him.  He shares many of Nicholas' old favorites, including Curious George (especially George Rides), Wheels on the Bus and Karen Katz books.  Will loves being sung to and is now making recognizable efforts to sing his favorites, Twinkle Twinkle Little Star, Happy Birthday (and blows out his fingers at the end) and I Love You, You Love Me.  He has started to initiate the "where is your...." game.  As he lays for a diaper change, he starts making exaggerated gestures and pointing at his favorite body parts until I respond by asking him, "where is your..."  He gets all giddy when he's asked where are his eyes, nose, teeth, tongue, toes, socks, pants, fingers, thumbs, hair...each playing of the games just makes him glow!

William gives the best kisses!  He is very attentive to greet everyone with a little wave, an adorable smirk and a blown kiss at departure. 

This boy is so lovable and social.  He follows his big brother around and just takes in everything Nicholas does.  You can already see the deep admiration he has for Nicholas, it just melts my heart.  On the flip side, Nicholas is already complaining, "William, leave me alone!... I'm playing with this!...Go away!  You're too little for my toys!"


Medically speaking, William continues to be a very complex case and he seems to baffle doctor after doctor.  He is celebrating 11 months of being cancer-free, but remains ever-so medically fragile due to his complex gastrointestinal problems.  William remains fully dependent on all IV nutrition and hydration sources and is attached to an IV pump for 16 hours every day while at home.  He is given some medications through his central line and others through his j-tube into his small intestine.  William is showing more interest these days in exploring foods.  Just today he ate 4 blueberry baby puffs and was interested in allowing a piece of pastrami and cookie to his lips for a quick lick.  These times, are celebrated, since he can then go extended periods where he refuses any sort of food even near him.

Exhaustively, I have to report that William's sleep disturbances continue.  Now at 20-months, he continues to sleep very, very little and requires extensive soothing to settle to sleep.  He is still rocked to sleep for every nap and bedtime.  This is an exhausting, daunting task, each and every night.  It can sometimes take a half hour or up to 2 hours if he gets his "second wind" after a 20-minute power nap or is disturbed when I attempt to move him to his bed.  In the 5 nights we have been home, I have slept all of 5 hours in my own bed.  The rest of the time has been with William, in his suite in the guest room.  Because it is so difficult to lower him in his crib with all his tubes in position and with him still sleeping, we now have William set-up in the middle of the queen-size bed in the guest room, with pillows surrounding him.  He continues to wake multiple times a night, naps minimally (sometimes only a half hour a day) and always wants his Mama in arms reach.

All in all, William continues to amaze us all with his ability to preserve through such pain and trauma, yet be the happy, typical toddler he is. So much of what William has been through has sadly become his norm....all that he knows. Its been a difficult reality for him and for us to experience... but his smiles and love make it all worthwhile.
He truly is our miracle.

Friday, January 21, 2011

The Joys of Daily Life

Tuesday January 18, 2011

After a long, frustrating hospitalization, you really appreciate the simple joys of being home. 
While William was pushing his doll around the house, a wheel popped off.  Big brother ran to the rescue to repair it.  He set-up an elaborate "lift" system (a dinning room chair).
He kept explaining to me he needed to work "from under the broken problem...that's how it has to be done, you know."
William took notes from a comfortable distance.  Of course, he was happily moved on to something else....ahhh, the attention of a 19-month old.
Another minute later, he was giving me his little "hmmmp" asking to color.
William's latest fascination is carrying around the stool to play with the light switches.
I have to give him credit, unlike his big bro, William is excellent at leaving the lights off after his night club act.
This first week home has been a whirlwind.  I have to say, Nicholas is very happy to have us home.  I think we played with every toy in the house, talked non-stop (like only Nicholas can do!) and survived on eating fun snacky, junk foods for every meal (ummm, did I mention we've yet to make it to the grocery store).

Monday, January 17, 2011

Home Sweet Home...

We are home.

Yes, home sweet home.

After a long 12 days hospitalized,
6 days of high-spiking fevers,
an abdominal CT scan under anesthesia,
 loads of bloodwork, a peripheral IV draw,
a painful sterile bladder catheterization,
an abdominal ultrasound,
4 days of blood cultures,
5 urine bag catches,
a dozen nights of Mommy & William sleeping in a cramped hospital crib,
2 liver doppler ultrasounds,
a scary bleeding stomach and j-site for three days,
the realization of the wonders of Toradol,
a special 5-day visit from Aunt Angie,
uncountable assaults by nurses, residents and specialists at all hours of the day,
consults with 3 Infectious Disease physicians,
one very scary Sunday night,
a clotted central line and an emergency TPA clot-buster crisis (which fortunately worked after a 2-hour dwell, thank god!)
3 nights of vital sign monitoring,
an injection of radioactive gallium,
two days of nuclear scanning under anesthesia,
bilateral bone marrow aspirations with bone marrow cultures,
12 days of round-the-clock attachment to an IV pole,
dozens of blood pressure checks on each and every extremity,
an unknown appearing and disappearing rash,
countless laps around the 11th and 12th floors of the children's hospital,
a brief Reiki session
dozens of freebie samples of mint ice cream from Cold Stone Creamery,
numerous mistakes made by hospital staff,
plenty of William kisses blown to nurses and other "babies"

....a mile-long list of conditions that have been ruled-out NOT to be the reason for William's fevers and still no answer for the fevers....yes, we are out! 
Finally... out.

Nicholas, Aunt Angie and Grammy welcomed us with a precious banner.

We celebrated this afternoon with a cupcake party! 
William poked his, with an occassional lick of frosting.

Nicholas gobbled up his cupcake, yakked up a storm the entire time in his super-excited "outdoor voice" and spontaneously got the three of us engaged in a Nicholas-original game of hang gliding, using laundry baskets held over our heads while wildly running around the house.
Oh yes, and William just had to have some coffee to celebrate!
Thanks Grammy for the replenished decaf supply!

Saturday, January 1, 2011

Play with your children...its the best investment you can make

Sunday December 26th
We enjoyed a wonderful afternoon at Grammy and Poppie's with cousin Dillon and Evy, Aunt Angela and Uncle Jim sledding in the neighbor's yard.  Nicholas was psyched to try out his "new red sled with the brakes from Santa."
William had a blast going down double-style.  He giggled in delight!
Go, go, go Dillon!
William always seemed to be on a sled with someone.  We took turns going down with him and carrying him back uphill so that none of the adults would have a heart attack.  Notice his eyes are telling us where he wants to be!
"Ready, set....GO!"
If Will could talk, I think he'd be saying, "these pictures are only holding up my fun!"

Our sledding spot was just perfect for our 4 and under crowd!
Little Evy was all bundled up and having fun too!
A push from Poppie!
Santa brought this great sled for William.  This picture has such a fun memory behind it.  It was taken the split second before William flipped in the he did with every attempt to pull him up the hill in a ride.
Look who's ready to go again!
Dillon tried time and time again to get momentum in the baby sled.  He was so darn cute...all packed in with the reins in hand...only for a big disappointment.  I give him a lot of credit for his innocent perseverance.
"Umm, I'm waiting!"
Sledding Crew 2010!
Thank you Aunt Angela for capturing all the great memories!