Gracie is sacked out right now. A cute little monkey-chuck. She didn't sleep well last night so he was very tired today. Mom is knitting on the bed. Daddy is playing on the computer. And Uncle Mack is playing on his computer too. Two laptops on the same table. So weird to think of how fast technology advances...
Today was all about Gracie's central line. Ever since the last trip to Gainesville, Gracie has been scratching around her line. Sarah and Jimmy noticed some ulceration around the area which is indicative of some sort of infection. Docs on Sunday thought it was a fungal infection and prescribed an anti-fungal powder. Well, they were wrong. Today when we removed the bandage, it looked so uncomfortable. It was clear that it was itchy. Poor little thing. It was also worse than it was earlier in the week.
The good news is that the line itself seems fine. The infection is just in the skin around the line and all under the bandage. Seems that part of the problem is that the skin around the line has been covered with a dressing that doesn't breathe for 2 months. The skin is just breaking down a little bit. So the started using a dressing that breathes. The Nurse Practitioner today prescribed an oral antibiotic to try to take care of it. Now the challenge is to keep her little paws away from the line. She tries to get to it all the time. Keeps mom and dad on their toes. :)
Tonight there are volunteers at RMH that are cooking dinner. I was just downstairs and it smells yummy. Smells like ham and mac & cheese. MMMM. We go down and grubb at 5:30 (central time).
Oh! I got to see Chance today. He's so cute. He has beautiful eyes. He was with is dad at the bone marrow transplant unit (BMT) and was wearing his little mask, like Gracie will be wearing soon. Sounds like all is going very well for him. We're very happy for him and his family. Please keep him in your thoughts and prayers too. :)
The BMT was full of folks of all ages wearing little masks. It was both sad and very happy. Sad to see so many little kids who are sick, but exciting that they all have hope. Definitely hit uncle mack hard though. I'm gonna have to toughen up a little if I want to be the supportive big bro. :)
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7 comments:
You don't have to be tough, you can let it out like the rest of us. We love ya for all your support. I'm sorry Gracie has an itchy problem, sure hope it clears us soon so she can be comfy again. LOL Me-Ma
thanks for updating us Sarah! I love to keep up with you all!! Kiss Gracie for me (and Chance if you get he chance heh heh)
It's always so hard to keep a port into the body open. Holes in the skin are just not supposed to stay open for that long. Maintaining the external parts is a challenge with all partially-internal medical devices. You see it alot with VADs for heart patients, too.
I think, in keeping with family tradition, Gracie is going to need some fashion masks! So far we've had arm slings and eye patches, so why not? Could we make some and autoclave them?
can you bedazzle one with a skull and cross-bones. :) ARRRRR!
We would do some with sequins and maybe one with whiskers like a kitty face.
I still have my box of eye patches!
If you ever accompany Gracie to surgery, (I did once and it was horrible for both of us, so now I make them give her an oral med to sleep before I hand her over) they will give you a mask with a bunny face on it. Lauren screamed. She hated it!
As for her line, did they give you a cloth band that velcros around her with a pocket in it to tuck in the tubes? Lauren's worked great for her... and she wore onesies to help keep her hands off too (although I can see how that would cut down on how much her skin could breathe).
Can't believe I missed 3 updates! Going to go read some more. Have a good day!
Kindall,
She has the tube tops... she even has a bunch of homemade ones too, but they dont cover where her line goes into her skin which is where she's pulling and scratching. Anyway, the tegaderm bandage is entirely plastic and so I think her skin just had enough and then maybe the climate change irriated it further. She has a more breatheable bandage on now, although she's still pretty itchy.
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