Sunday, June 27, 2010

Day +2 : steep hill to climb

So. What do you want to hear first? The good news or the bad? Let's do the good news first because I hate being a downer.

Alrighty. Well, first off, Brian's mom (Dee) came into town for a few days to visit and help out with the kids. This has made things the past few days so much nicer. I love being able to have Brian here off and on through out the day during this rough patch. She flew in last Wed. (I wanted to post about it sooner, but I didn't have a picture to show.) and will leave Mon. afternoon. It's been nice to see another familiar face, ya know?

More good news you ask? OK! Daylon's labs came in this morning and he's they show that he's doing great. Miraculously his hemoglobin level went from an 8.5 (at 8.0 you need a blood transfusion) to an 11. No one can explain why, but I'll take it! I don't need a reason! He was having some high blood pressure,so they increased his Morphine drip and it lowered his blood pressure. Guess his pain is back to a comfortable level for him. :) I neglected to tell you all but Caleb and the twins have had a flu bug. Brian told me this morning that they're back to their old selves. That's good two-fold: one, they're not sick and feeling crummy and two, I can start seeing them again! I miss my kiddos and can't wait to give them each a giant hug!

OH! There's been CRAZY thunderstorms out here! Tornado warnings too! The storm has died down (for the moment) and there's been no sign of a twister, thank goodness!

Now, because I can't put it off any longer, the bad news.

Daylon's worse today than yesterday, if you can believe it. The mucositis is consuming his little digestive tract. I can see blood and blood clots draining from his g-tube as I type. I can't hardly see what is happening in his mouth anymore because it is so filled with blisters and drainage. We literally have to turn his head face down to try to force out the mucus so he can breathe. He sounds like a lawnmower starting up. The docs have been in and out through out the day checking on him because they're concerned at how quickly the mucositis is progressing. His oxygen saturation level is in the 80's so they put him oxygen (blow-by) moments ago. They told us that if he keeps going at this rate he'll need to be sent next door to the ICU and intubated (tube put in that will run from his lungs, out his mouth and coneccted to a ventilater that will breathe for him). That scares me to death. There are so many variables to consider. Lets not think about that now. We're not there as of yet. Another problem that Daylon has run into is his body retaining fluid. He's been putting on quite a bit of weight over the past 36 hours and has all but stopped peeing. They've tried Lasix every few hours to help him drain the extra fluid but it's not working. Tonight they're starting him on another type of diuretic. With any luck, he should be back to his normal weight soon. That being said, being swollen is not something well tolerated by EB kids. His skin is pulled tight resulting in an insane amount of blisters. Of course, it doesn't help that his skin is breaking down as a result from the chemo as well. Today I used over 50 needles. Each needle represents one to two blisters that we've lanced. I am resisting the urge to show you all the pictures Brian took at his bath and dressing change tonight. Although EB skin/wounds have become part of our daily life, it's a bit much to take in when your eyes are first introduced to the sight.

Well, it's off to bed with sweet dreams of a better day tomorrow.

"Walk towards the sunshine and the shadows will fall behind you." - author unknown


Lucy and Ethel said...

I learned about Daylon from Patrice; sending prayers from North Carolina!


Pati @ A Crafty Escape said...

Poor baby.... here's hoping things start to improve for him soon.

Linda said...

Hi Jen: Looking at these pictures just breaks my heart. Praying so so hard that Daylon will begin to feel a little bit better. God I HATE EB so much. Children shouldn't have to go through this HE** just to get better and live a normal life. Please take care of yourself and give Daylon a gentle hug and kiss for me. Love Leah's Nana

Mom to Many said...

I am praying for Daylon and think of him often. My heart goes out to you.


Bella's Blessings said...

Thinking and praying for you from around the corner. Glad to hear the kids are feeling better, and so sorry to hear about Daylon's current challenges. I am grateful for an amazing staff up here, though. I KNOW you are in the best EB hands out there, because we are too! Your compadres, the Ringgolds

Grandma Kris said...

I can barely imagine the pain his pain causes you. It hurts me.
May the blessings keep pouring out the windows of heaven upon Daylon and each member of your family. He is a very blessed little boy to have such champion parents and grandparents.

The Jones Family said...

Jennifer, Don't know if you remember me from Corona...I have been following the story of your son via facebook and just found your blog tonight. Please know that you and your family are in our thoughts and prayers. You are a very special family. God bless you all!



Anonymous said...

Hi there, Looks like you have a tough little guy there. A proper warrior! He is doing well, am following his progress from South Africa. (Accidentally came across his site while going through my son's site - he is a cancer remission now though, luckily for us), But Daylon is really having a tough time, but he is doing well. He will win this battle....Well done Daylon, keep up your fight. Will pray for you to have the strength for the fight you are in.