Abby Update & Purple Tongues

From Michelle:

Today was a long, tiring day for everyone, especially Abby. She handled it like a pro………well until the end.

Abby's bone marrow is still not producing the cells she needs. There were still no white blood cells and Abby needed a platelet and packed red cell transfusion. They may begin shots to stimulate her cell production in the morning, if there is no improvement. The shots are very painful and most adults hate them. I really don't want her to go through any more, but I also want her to get better.

The wound near Abby's g-tube looked worse today. It is the main reason they are considering giving Abby the shots. It is swollen twice as big as yesterday, angry red, with black areas. It is so swollen and necrosed. Stomach contents are leaking out of it onto her already sore skin. The stomach acid is further damaging her skin. A mixture of Maalox, A&D and bactroban is helping some, but it is still sore.

We consulted with a gastroenterologist today. He wants to do an ultrasound of her liver and several studies on her g-tube. He is also requesting a consult with a surgeon. He told us flat out that if her counts were up (white blood cells, platelets and red blood cells) he would recommend having the g-tube removed and replaced in a new spot. Please pray that the tests are ordered, preformed and that the results give a clear picture of what we need to do for Abby.

It is also time for her needle in her port to be removed and replaced. This is something she usually handles well, but it is coming at the end of a long day. As soon as her antibiotics are in, we will have to start that chore.

All discussions today were in front of Abby and she understood most of what was said. Not fun, but she handled it all like a pro. She handled everything UNTIL she heard they wanted to paint her tongue purple. Needles, talk of surgery and doctors pressing on her belly weren't even a bump in the road. Finding out they wanted to paint her tongue purple brought her to tears.

Abby has a yeast infection on her tongue. The medicine she is on isn't working and the other "normal" medicines are too hard on her liver. Her doctor wants to paint her tongue and inside of her mouth with a purple medicine that should destroy the infection, but will also leave her tongue and mouth purple for a few days.

Our beautiful bald princess has had to endure hair loss, tubes sticking out of her body and sores. She is noticing that some people are staring at her. She says, "that person is looking at me with a mean face." They are not mean, just curious and not so subtle. No wonder she wants to skip the purple tongue.

From Brent:

Want to have some fun and lift her spirits? Here is Abby and her purple tongue:


Abby shows off her new purple tongue that she is really
apprehensive about. She did not want to use the medicine.
WOULD YOU PAINT YOUR TONGUE?

We're hoping a bunch of friends and kids will "paint" their tongue/mouth, send us a photo with a short caption-message, and we will put up a post tomorrow with all the pics. Here's Brent leading the charge to show you what we hope you'll send us:


Hi Abby! I wanted to show you my beautiful blue-purple-violet tongue!
I love your purple tongue, it is SO pretty, that I wanted to
paint mine too! I love you! Your Dad - www.riggsfamilyblog.com
That's what we are looking for. It would be a LOT of fun. Here's some suggestions for coloring your tongue: suckers, popsicles, non-toxic markers, food coloring, etc. (I had an extra special trick up my sleeve... any guesses?)

Send us your pics/captions and we will put up a fun post tomorrow with all the pictures. Send them to: brent@brentriggs.com