Monday, September 13, 2010

Day +81

check out the cow-lick in the middle of his uni-brow! It's too funny!
\Hi Everyone!
Things around here on 5D have been busy! Payton (RDEB), who is Daylon's next door neighbor, had is transplant on Friday, today baby Elle (JEB) starts chemo today and with any luck, Daylon should be out of the hospital by the end of the week! Bella (RDEB) is also in the hospital, on 5C and hopefully they'll  all be taking their next step back to 5D in the next couple weeks. :)
  Dr. Wagner was going to have Daylon discharged today, before he needed his Hickman replaced, but has now decided to keep an eye on him for a bit. The next step as well, is to be able to handle having dialysis at the Mayo building. Today was try number two and a "try" was all it ended up being. Daylon is the first EB kid to need outpatient dialysis and lets say they're not too familiar with EB. When dialysis travels to the room, it's considered ICU and the nurses who have come up have become familiar with Daylon and our routine. On one trip down, ECG tabs were put on his chest before I was able to realize what he was doing. :( It's really dark and kind of creepy in that building, actually. For being world renowned, you'd think they'd have more windows or add a fresh coat of paint. Anyway, today when we got down there his blood pressure went all the way down to 49/30. Yikes. And that was before he went on. They decided to bring him back up to his room, where there resources available if he were to need them. Eventually, Dr. Vergese decided to cancel dialysis for the day. Woo-hoo! Two days in a row! I have a feeling that tomorrow will be an early day though.
  This weekend Daylon's just been kind of sad and moaned a lot. I wish he'd smile a little more...it'd make me feel better! They've turned off his feeds to see if that will help him to be more comfortable. He's been so gaggy too
Rachel doing an impersonation of Daylon's eyelashes on his right eye. She says (jokingly...I think!) that she's going to take an eyelash curler to it! His face had a ton of sores on it and one time, especially on his eyelid and around his eyes. The scars make for interesting hair growth. :)
 
  Well, Dr. Tolar is coming in the afternoon and we have a few big things to talk about. I'll catch you up on all that later! Hope your day is going well! Thank you for checking in on Daylon! Have a happy day!

5 comments:

ANewKindOfPerfect said...

Oh my gosh, the unibrow cowlick is too cute! :) I hope Daylon will start giving you some smiles soon, and you guys get to be discharged.

Jen said...

Been following you for awhile but never posted. Just one of those invisible prayer givers. You are a great mom....don't ever doubt that. You inspire me to be a better mom every day!

Anonymous said...

Like the previous "poster" I've been following your blog while reading Jonah's blog, but haven't posted.. I have been praying for Daylon & the other EB babies for awhile now. I am so amazed at the progress that Daylon has made...God is truly watching over your sweet little boy and these other children. I will continue to pray for all of you on this remarkable journey that you're taking. I know God has great things in store for Daylon. God bless you all.

Donna Tadlock
Alabama

Mom to Many said...

Sounds like things are moving forward! Yay!
Change is tough, but hopefully the kinks will get ironed out soon.
We will watch for your updates as they come.

Cheryl

BRIAN AND BROOKE said...

Wow did you say discharged? The fact that its a possibility now is just amazing !!!! I just think from where he came from to where he is now!! Its just a miracle and I am telling you Daylon has got it in good wit hour Heavenly Father ;) I am so thankful for all of Daylon's progress and how far he has come! Jen he could not of done it WITH OUT YOU! Oh , and I am loving the cowlick-too funny!