Luke's morning usually starts earlier than he would like with medicine, vital signs, and sometimes doctor visits.
Some baby cuddles first thing in the am.
"Smoke Medicine" as Luke calls it (this helps the mucous in his lungs break up)
Today is port needle change day and power shower day. He has to come off his IV fluids.
This is the needle after being taken out of his chest. It is 1 inch long and goes straight into his chest into a hub underneath his skin. The hub is connected to a catheter that snakes through a major vessel into his heart. He can get IV fluids and nutrition though it as well as blood draws.
Off to the shower (no pics)
New port needle in and dressing in place.
Fresh clothes, sheets and blankets!
Hooked back up to his IV nutrition, IV hydration, J tube feeding , and G tube draining bag.
Now off for something special.. a scavenger hunt of super hero's throughout the hospital. His Child Life Therapist creates them for him. Don't tell him but this is a great way to get him to do lots of walking!
Off to the lobby after getting his first superhero on the 6th floor.. oh yeah and making a library stop borrowing a few books and movies.
First clue leads him to the Sibling Center
Second clue leads him to the gift shop
Third clue down the long hall to the parking garage
Found it on the Children's hospital Lego display!
Short rest to look at the snow.
The next clue leads him to the second floor at the Toyasaurus.
Pit stop at the Pop Stop for a milkshake on the third floor
Scavenger hunt completed after finding the last two on the 7th floor.. prize is an iTunes card to get some music for his MP3 player.
Now onto PT
Only knlocked over a bunch of stuff off his bedside table once throwing this ball.
Daily weights done
Now onto school. A long day of math.
Stringing his new Beads of Courage Beads for the last week.
And just like every 13 year old, some days have some rough spots. This one involved not completing his work as he had reported when I was away. So some of his normal day things didn't get completed. Even though you are in the hospital and have all the hospital stuff to deal with, you also have the normal kid stuff to deal with. if a routine is not kept and expectations adhered to the transition back home is even more tough. And this has been three months, if I let Luke do whatever he wants in the hospital (which would be video games 24/7) he has a lot of catching up to do for school when he gets out. It is important for his mind and body to have a normal kid routine... Which brings with it the normal kid issues to (on top of the medically fragile, in the hospital a lobg time separated from family kid issues)
Reading is something that helps Luke when things are tough.
Then big news. GI came in and said Luke could have some reall easy stuff now, even before he gets off TPN. It was decided a half of a piece of toast would be what he could have tonight. He was thrilled!!
It tasted so good!
But then less than 5 minutes later... Retching, belly pain, and feeling very yucky. He cried as it was so disappointing. He feels like he will never get to eat again.
Pain medicine, anti nausea medicine, and his melatonin helped get him to sleep.
So back on his oxygen and pulse oximeter on...
Lights out
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