Rus & Lisa: Broviac Out, Port In

March 12 - 14, 2012 we spent at Oakland Children's Hospital. Here's the story of our stay.

Monday, 3.12.12

Blake was first admitted to the day hospital for a factor VIII survival study. Which meant labs were drawn at specific intervals post infusion...to determine the half life of his factor, which was about 5 hours.
Here, Blake got a peripheral IV and our amazing nurse got it on the first stick. yAy! Blake cooperated for his vitals, height & weight, but wanted NOTHING to do with the name band they put on his ankle. So I wore it!

We were there for about 6 hours. Blake was soooooo good & even took a little nap. His bed was by the windows so we got to see the BART, or "TRAIN!", pass by every so often. Blake LOVED it (see above photo!) He was also in heaven playing his games on my phone & trying to hook up his syringe to his line.

After the study, we were admitted to the fifth floor...the hem/onc unit. Blake now had an IV running which made things a little tricky...but we managed. Rustin found a basketball hoop in the playroom that we borrowed and Blake wowed the nurses and doctors with his skills.
(Our poor roommate got to listen to him shoot over & over.)

When the resident came in to assess Blake, he put his stethoscope to his chest and Blake immediately started saying "Kight! Kight?!" (aka, light!) And then I realized he remembered the silly animal lights most of the nurses & doctors had on their stethoscopes last admission.

What a smarty!

That evening Blake had an ultrasound of his neck & right arm to check circulation for portacath insertion and also check the status of the blood clot in his main right vein from his PICC line.

Our awesome hemophilia team got us a room at the Family House located a block away from the hospital so Rustin didn't have to drive back and forth to sleep, or sleep in the car in the parking garage! Awesome!
I stayed with Blake in his room...he & I shared the pull out chair, so I got lots of snuggles!!

Tuesday, 3.13.12
Surgery Day

We knew today would be a long...fasting since midnight & Blake's surgery was scheduled for 11am. But just our luck...when the surgeon, Dr. Stehr, came to talk to us that morning he said the OR was super busy & surgery wouldn't be until after 1pm. Grrrrrrrrr!

So...we tried our best to keep Blake busy.
He had a long bath and we walked/drove miles on that 5th floor.
And rarely did Blake request his favorite meal, cereal.

At 10am the playroom opened. Blake was in heaven!!
He was so excited to, "coke!" (cook) He was pretty worried that the pans didn't have lids & kept looking for them. Eventually he got over it and made us all pizza, fries, & eggs! There was even a little blender that made noise...so he made some shakes. YUM!

Blake painted & shot baskets.
Some teeny babies came to hang out with their moms and Blake was pretty excited to see them.
There was a little wheel chair that he like to push around. I asked him if he wanted a baby to ride in it, talking about a doll, but he looked over at the little 3 month old in the room and said, "Baby?!"
"Uhhh. No sir!" =]

Like I said...we walked & drove (his Flinstone car) a LOT. Blake loved being able to get his own hand sanitizer.
We played games & watched movies on the phone and ipad. We were shocked at how good he was being. Rustin & I didn't eat all day, because we felt guilty, and man...we were STARVING!
Poor little guy!!

Finally, at 1:30pm OR called to say they were ready for us.
By then Mr. Blake had fallen asleep & had gotten a decent 60 minute nap.

We got to take Blake back to the anesthesia induction room where we squeezed and kissed our little guy goodbye while Dr. Clark (the coolest anesthesiologist at Children's) gave Blake the propofol to make him sleepy.
And then they made us leave...WORST PART EVERRRRR.
But we knew Blake was in excellent hands.
(3rd pic...Rustin anxiously waiting.)

While we waited...we rushed to the cafeteria to scarf some nasty - but oh-so-good-at-the-time - chicken strips.

About 2 hours later we were reunited with our little guy. Dr. Stehr said the broviac removal and portacath insertion was moderately hard but successful. Dr. Clark led us back to recovery where Blake was sleeping. He looked so sweet & peaceful.

And then he woke up.
He was NOT happy. Poor little guy. All he wanted was his daddy & to hide his face.

Back in our room, Blake was ready to EAT! We ordered his meal and wandered the halls while we waited. I begged the kitchen to send a whole grilled cheese sandwich because he'd been fasting since midnight, but they said they couldn't because of the order!
While we wandered, Blake discovered the water & ice dispenser...LOVED it!

Post surgery...Blake was getting factor every 6 hours with pre & post levels draws. Each time his blood was drawn we show him and say, "That Blake's blood, it's red." He usually said something about how it was water and he wanted a drink!

Blake's HALF OF A GRILLED CHEESE arrived, which he inhaled, (at home he's been known to eat a whole sandwich, plus!) along with the mac n cheese and strawberry ice cream while he watched some NCAA playoffs.

Wednesday, 3.14.12

More lab work today. We spent the morning playing & eating, that boy of ours can eat!
In the playroom, Blake impressed the volunteers with his "coking" & "bass-a-ball" skills.
He KILLS me.

Here's the portacath...the black part is the needle inserted into the port which is under the skin. For infusions at home we will just access the port for factor, then removed the needle. This is going to make life so much easier for Blake! He won't have any thing hanging out of his chest, he can swim, & bathe more regularly!! We are so excited!! I've been dreaming up some fun water activities to do this summer.

Dr. Matsunaga discussed with us the results of Blake's ultrasound of his arm. She explained that a portion of the right subclavian vein is not patent (this is the main vein that returns blood flow from the right arm to the heart.) That there is no blood flow through that area, most likely due to the PICC line he had in 2010 that migrated out of the vena cava (main central vein entering the heart) and into the subclavian vein, just above his armpit. Blake's body, due to the altered blood flow, made new blood vessels, called collaterals, that have bypassed the blockage. These can be seen on his right arm and upper chest. It's encouraging that the right arm swelling has improved quite a bit, but we won't know if he'll have future problems because of the altered circulation. =[

We are hopeful that his young little body will overcome this obstacle!!

Dr. M is so awesome...she drew this great pic to help us understand.
I added the arrows & words.

That evening, Blake discharge orders were written while we had dinner in the cafeteria.
We were SOOO excited to be going home! Our stay was great and everything went really well, but gosh, there is no place like home!