Day +235- out of surgery

The resident that was on the night Daylon coded all those months ago was a doctor named Brian. He helped us through the mess with chemo and his last night on was that horrible night. His rotation was up and he moved to a different unit. I've never forgotten the kindness he showed us during that awful time in our life. One day in particular has stuck in my mind. I was border lining a nervous breakdown and he came in for a "social call". I was a complete wreck when he came in the room and I felt so much better by the time he left. He treated Daylon like he was a person and not just a patient. Anyway, he was on call tonight and when he saw Daylon's name on the patient list, he came in to say "hi" and catch up. Camera phone pictures again...sorry guys.

This may be the worse picture I've ever taken of Daylon. His poor eyes give him such drama.

 I want to thank you all for your prayers and thoughts of Daylon today. I wasn't the only one nervous about the surgery today. Turns out, all three doctors were on edge too. They brought in the anesthesiologist that has intubated and extubated Daylon in the past and we all went over the plan for surgery...and then we went over it again. The plan was to use Propofal through his Hickman and not intubate. Instead they would just use a hose of blow-by (oxygen blowing on you). Dr. Rimmel was going to cauterize and seal the tongue and they would use several Red Robinsons to grab the blood as it came to prevent him from aspirating on it. If they couldn't keep on top of it, then they would emergently intubate him. Dr. Tolar would be in the room the whole time over seeing Daylon and collecting the tissue at the end. Sounded good to me.  I opted not to go into the OR this time. There was nothing for me to bandage, I made the pulse oximeter EB friendly during the pre-op evaluation, Daylon was wearing pants so blood pressure reads would be a breeze, they weren't going to use ECG leads and all of the doctors and nurses knew Daylon and had worked with us on several occasions.  It's really hard for me to do, but there really isn't a reason for me to go. I'm trying to learn to loosen my EB mommy apron strings as Daylon gets better and better.
  After about an hour in the lobby Dr. Tolar walked out to tell me that everything had gone PERFECTLY (of course, not without scarring me half to death. What doctor comes out of the OR shaking his head and looking at the ground? I introduced him to a new rule: make eye contact with the family and smile when you leave the OR and then you can shake your head all you want! LOL!)! Not to be braggy, but he said that Daylon amazes him and just jumps over one hurdle after another like it's nothing. He also said that he didn't cry or act scared while he just lied there waiting for them to get started. He said  that he just looked around at everyone and babbled. That made me so happy to hear. I wondered the whole way down the hall if he was screaming and scared in that cold, bright room.



after surgery--looks good, right?! :)

 Anyway, everything went so well that Dr. Rimmel said he could be released home (RMH) today. Dr. Tolar vetoed that idea, so we're still here. We're happily situated in a room on 5D. It's so nice to see everyone!
 Some pictures of him "playing" after surgery:

lets pretend that he's wearing an adorable smile holding his Valentine Pooh ;)



Pooh is getting some smooches



Okay, no denying it. Daylon was less than thrilled after surgery. I'm not sure if he's screaming at the doll or going to eat it... Either way, it's not a good day to be Pooh. :) 

  Daylon did have an allergic reaction to one of the meds given to him in the OR so they knocked him out to keep him from scratching his skin off. We are seriously becoming limited on the pain meds he can receive.
  Well, that's the news on this end. I let you know when we get the results back from the head CT he had this morning.

HAPPY  VALENTINE'S  DAY!