Wednesday, June 1, 2011

Out of surgery

Wow, what a morning.

Okay, so this is going to be pictureless and short, but I don't want to keep you all waiting...

Eye exam- there is some permenant scaring, but he still has his vision

GI scope- got as far as the esophagus...once she saw that it had a tear, she backed out.  He will have another scope down through his g-tube in about 4 months when the site has had a chance to fully heal.

Respiratory scope- He ended up needing to be intubated so they couldn't see the airways (they go through the ET tube), but they said his lungs looked pretty good considering everything he's been through. There was a thick film covering them so they took some cultures. The doctor said he had no clue what it was, but he's testing for everything. First results should be in by tonight with the last of the results in in a couple of weeks.

G-tube- Overall, it went nicely. There was a lot of excess scarring on and around his stomach but they added a third hole and cut it back.

Biopsies were taken from his hip. Dr. Tolar was shocked at how beautiful his skin looks, but was disappointed to see how skinny he is. He said he is quote, "He's beyond skinny. It should never have gone this far." . He agreed with me that his foot is infected and took a culture from it. I think I forgot to mention this last post, but last weekend Daylon's foot was hurt and the skin just came right off. He never blisters anymore. When it comes off, it just poof! Comes off. Anyway, it's one big mess and it started to get really stinky and red. I tried the usual bleach baths, silver ointments, etc. but they were no help. His immune system is just shot (between BMT and malnutrition) so infections seem to flock to him.

Okay. So that about covers it. His room is super fancy and state of the art here in the new hospital. I kind of miss the homey atmosphere though. Oh, well. We're having fun catching up with all our old nurse and dr. friends. Brian comes in tomorrow (for our portion of the genetic testing)!! I can't wait!

I'll try to post more later.


Jan's Blog said...

All in all pretty good news. I'm praying for his nutrition...that he will want to eat, and that he will gain weight and strength, and, of course, everything else. So glad he is out of surgery!!! Hugs and love...

Anonymous said...

I am praying so hard for Daylon. Thank you so much for updating on everything going on. (((hugs))) to you all!

Kristi- Castle Rock, CO

Anonymous said...

So glad to see this update, We have been praying all day for Daylon and hoping that everything would go well. So glad he is out of surgery. I know you are exhausted Jen. Hope you can get some rest and wind down alittle bit. Daylon is continually in our thoughts and prayers and so are the rest of you and your family. We Love Baby Daylon and all of you so much. Hang in there Superman, you are such a true miracle and such a blessing. Hugs to all of you.

All Our Love;
Myrna & Dwight CA

Anonymous said...

Welcome back to MN. Thank you so much for the update. I have been praying for your family since you started this Blog. I work at the hospital next door to the new childrens Hospital. I hope to see you around as would love to meet such a great mom and person. God Bless you. Praying Brenda U

Mom to Many said...

I am so glad things went so well.
I hope he can gain some strength now.
Poor little guy.

I am guessing that he has sort of lost his personality. (My little guy did when he was too thin and anemic.) We were so glad when he gained it back. We called him our "un-baby" during that time. (Hope that is not misunderstood by anyone.)
I hate seeing Daylon and your family go through this.



Anonymous said...

Praying for Daylon and your family! Thanks for the update.

Becky from Texas

Anonymous said...

Praying for Daylon to start gaining weight soon and to overcome the infection and the surgery.

It's so good his skin is much better! Thanks for the info!

Thinking about you and about all your family is through. I hope your days becomes much calmer and happier soon!


lisaray said...

Do they have any idea why his weight is so low? (I immediately think of a friend who's daughter was losing weight, having major digestive troubles, and was diagnosed with celiac's disease. Of course, I'm sure they have tested Daylon for everything. Hope they get answers for that soon. So glad the skin is improving. Here's hoping that the next few months show marked improvement on all fronts!

Amber said...

Oh, dear. I didn't know he was going through all the testing. Waiting for results seems slower than any other process. I hope it goes by quickly for you guys and you get some good answers.

Jamie said...

prayers and more prayers and love to you guys.