Sunday, July 4, 2010

Day +9:

Daylon's days continue to fluctuate with ups and downs. It's 2 am so I'm making this a short one. Buckle up! Daylon's airway and lungs continue to swell and tighten. He's suctioned through his breathing tube at least once hourly to try and retrieve the extra fluid at the top of his lungs. They can't go deeper than the tube without causing damage, so some fluid is always there. He continues to drain out his nose and mouth (mouth is shown in the picture). He has a good amount of blood in his secretions. His hemoglobin was 8.2 this morning so a transfusion is probably in order for tomorrow (they transfuse at 8.0). His platelet count is at 20 (transfuse at 10) so he may be getting that as well tomorrow. And when I say "tomorrow" I mean in a few hours (since it's so late now). His kidneys are functioning a bit worse today but nothing too horrible. His body is still retaining quite a bit of fluid. He was at 10.4 kg on day -7 and yesterday(day +8) he was 13.2 kg. Keep in mind that each kg=2.2lbs. Today is was 12.7 kg! Yeah! Down a bit! He's still swollen to the gills, but he's working his way down! He's kind of like a little pressure ball you can't squeeze. :) I'm posting some continue picture of his hands so you can see what all the swelling and chemo has done to them. OH! Dr. Tolar is soo impressed that he doesn't have a fever again today! Yay! Also, he's count is at .5 (or 500) today and .3 (or 300) are infection fighting cells!!! The docs. can't say enough! Thanks for all the prayers!!

before chemo during chemo

after chemo

This is my least graphic picture, sorry. I wanted you to see how one days worth of swelling is. Those bandages were not put on tightly...we just set them on him! Check out those creases!
Really quickly, we had another exciting thing happen around the Edling household. Yesterday, the kids wanted to race me down the elevator. Idea is: they take the stairs and I take the elevator and they get the biggest kick out of standing there when the elevator doors open. Anyway, when the doors open only Caleb is standing there. He starts to tell me that Keira fell when I can hear her screaming. Apparently, she realized she needed to pee and ran off towards the bathrooms with Violet. When she got to one of the game rooms and the flooring went from tile to hardwood, she fell resulting in a messy gash on her chin. One trip to the ER and 5 stitches later she's as good as new. The doctor even gave her a new book for being a good patient and not crying! What a tough cookie!


Linda said...

Oh Jen: Those pictures of Daylon's fingers make me so sad. I will be saying so many extra prayers for your little boy today. Don't forget you have your EB prayer warriors out here praying for Daylon every single day. We love your son and hoping that every single day brings him closer to kicking some serious EB butt. Grow Cells Grow. Love Leah's Nana

Jan's Blog said...

Thank you for sharing the photographs. It gives me a better sense of what my prayers must be. You and he are so blessed that he can't feel it. So blessed that he sleeps and dreams pain free.

Sometimes I think that following this blog and the story of Daylon is more than I can stand. I am terribly tender hearted and my emotions are running high these days. And then I remember that you are living it, and if you can do it so can I!

Blessings to all!

Anonymous said...

Seeing those photos and reading your blog I can't help feeling some relief that he's sleeping through it all. Hopefully all will be better when he wakes up. Must be so hard on you all. Thinking of you.

Anonymous said...

I've been reading for a while now, but have never left a comment. (I found your blog through Jonah.) I just wanted to let you know that I am praying so hard for your sweet baby Daylon. ((HUGS))

Melissa :)

Nancy said...

Sweet baby! I'm so glad he's sleeping through this! Wow, those pictures really do give a clearer idea of what you're dealing with!! That swelling needs to stop! Awesome that the cells are growing though. Still praying every day!

Mom to Many said...

Heal baby, heal. We are praying and you are on my mind.



How grateful and a relief it must be for you that he is sleeping through this all! Thanks for the pictures, it really gives a better idea whats going on and what it really looks like. What a STRONG MOMMA you are!!!!!!! I am SO SO SO HAPPY about all the good news from the doctors.
You can do it Daylon you can fight this EB!! We all LOVE YOU and are ALWAY PRAYING for your healing and recovery!!!