Valentine's Day 2010

Yes, you are reading the title correctly...Valentine's Day 2010. 
Truthfully, Valentine's Day has never been a particularly favorite holiday of mine (that is before having kids and taking on the challenge of serving heart-shaped foods for an entire day!).  Last Valentine's Day, we were days shy of William's resection surgery.  Looking back, I knew I was scared beyond belief, there was so much on the table... especially since the team at Sloan was concerned with cancer involvement in William's liver.

Out of a last-minute fear of the worst, I asked a neighbor, Jaime Hill (who has uniquely become a friend through this experience), if she could take a few pictures of William before his surgery.  She had done an amazing newborn shoot of William when he was 10 days old and family pictures in November, which turned out to be just a couple weeks prior to his diagnosis.

 As it turned out, Valentine's Day was the day that just happened to work for her.  She also recruited a friend of her's, Raine Dufrane to come and capture William. 

These photos, the meaning they hold to us and the thoughtfulness and generosity of these two talented women remain incredibly close to my heart a year later.

~ William, nearly 9 months old ~

photos by Jaime Hill

His hair was just starting to grow back after chemo.

 

Jaime graciously gave us a beautifully framed print of this photo.  Its hung in our entryway ever since.

~ photos by Raine Dufrane ~

Nicholas ~ 3 years 3 months

~ my most treasured ~

A boy, his Poppie and George

January 24, 2011
We are so fortunate to have Poppie retired now and willing to come to our house regularly help.  Through this time, we've been blessed with so many special moments, including this quiet Monday that Nicholas was home sick with the stomach bug. 

William adores this toy just as much as Nicholas did around the same age.

He knows exactly how to make George work and follows his every move so intently.

William and his Poppie are just inseperable on "Poppie-days!"

The Highlight of our Hospital Days...

I've always said that Nicholas is William's best medicine.  This picture is only proof of that. 

When we are hospitalized, Daddy and Nicholas come to visit around dinner time nearly everyday.  With each visit, Nicholas fills the room with his energy and plenty of stories of his school experiences, a laundry list of tv requests (including Danger Rangers, even if its in Spanish) and sharing his request for "a picnic dinner in William's bed."

This evening, Nicholas arrived wearing his goggles, spilling stories of his repair jobs at home.  When it was time for him to leave, he promptly put his goggles back on (yes, true Nicholas style!).  He and William played kissy face, with each taking turns of laying a good one on the other.

Talk about priceless!

Mommy & William

Some rare glimpses of Mommy and William time....


including Mommy's puffy, exhausted eyes....

but priceless, all the same.

Making Improvements

January 14, 2011

By this point in his hospitalization, William was experiencing periods of feeling better.  I treasure these pictures by Aunt Angela...especially this one.

The hospital cafeteria sells these giant rice crispy treats.  William not only enjoys them like his Mommy, but he insists on holding the ENTIRE treat. 

Don't even try to give him a smaller piece....he knows better!

Passing time with a little game of "Where is your....belly?"

This boy is well trained in the use of the hospital staff's Vocera communicators.

Yup, he knows he has to talk into it!

The Future of My Young Padawan

Every now and then you see something that you just know will be in your future.  That's exactly what I thought to myself after seeing this commercial. 

Follow this link....

http://www.youtube.com/watch?v=hN41zcXJjmk&feature=player_embedded


Agree?

....and thanks Daddy for the "Padawan" education!

The Gallium Study

January 13 & 14, 2011

A Gallium Scan was ordered to determine the source of William's infection and/or inflammation that would be causing such dramatic febrile episodes.  The test was days in the making, or shall I phrase it days in the decision-making process by all the docs involved in William's care. 

A Gallium Scan is a nuclear medicine test that uses a special camera to take pictures of specific tissues in the body.  For this test, William was injected with a radioactive isotope tracer (gallium-67) on Wednesday through his central line.  The tracer was absorbed in his body's tissues, bones, liver, intestines, organs and glands where inflammation or a buildup of white blood cells is present.  After waiting a day for the absorption to occur, William was placed under general anesthesia for two hours in the scan machine.  On Friday, after two days of absorption time, the test was repeated for another hour and a half of scanning.

Areas where the tracer builds up in higher-than-normal amounts show up as bright or "hot" spots in the pictures. The problem areas may be caused by infection, certain inflammatory diseases, or a tumor.

Being put under general anesthesia has become a routine part of William's life....unfortunately.  After many difficult and traumatic experiences of being put under and problems with waking, I've taken an advocacy role in telling the anesthesiologists how we run being put under.  We no longer to Versed...I refuse gas...we do it one way....and one way is the only acceptable way.  I go to the location where William is going to be put under (sometimes an OR, in this case right at the scan machine), I hold him, they inject him with Propofol, he falls asleep, I lay him down, give him a kiss, tell the team to take good care of him and quietly leave the room.  Its the only way that works for us....and I have to say, its been working well for months now.

Seeing all the "caution: radiation" signs on the doors of the room where I just left my baby puts the whole scenario into perspective.

Here is just one of the 287 images from William's Gallium Study.  I have to say, its rather freaky to see these images.  It reminds me of an alien laying there....not my beautiful son.  if only this entire experience was being perfromed on an alien...instead of our William.

In the end, the 3 1/2 hours of scanning under anesthesia, over a 2 day period was found to be negative/normal....and did not give us any more insight into a cause... except for the fact that William did not have an obvious infection or area of inflammation at the time of the scan. I only feel it necessary to share that this test was done after William had been on Zosyn (a broad-spectrum antibiotic) for a week and a half, Vancomycin (the infamous "drug of last resort") for 5 days, an antifungal for 3 days and over a week of anti-inflammatory meds.  I guess we will never know if the source of infection/inflammation had improved with the treatment prior to the test, if there was never a source of infection/inflammation or if the test was even a waste of radiation exposure, time under anesthesia, additional trauma to poor William, unnecessary cost to our insurance companies...and a whole lot of stress for all of us with care so deeply for William.

Sleeping beauty....with crazy hair!

January 13, 2011

Classic William

When this little tike isn't feeling well, he's content just to stay cuddled on Mama....no 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.

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.

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.