Monday, February 14, 2011

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.


Mom to Many said...

Oh my goodness what a frightening day. I am so happy that things went well.

I was worried.


Aviles Family said...

I'm so glad that the surgery went perfectly! That is wonderful news! The skin on his arms look amazing! I hope things continue to run smoothly. Looking forward to the updates later on.

Michelle said...

Yay! I'm so glad it went well! I was thinking of you guys today. It must be nice to see the familiar faces of the people that cared for Daylon there!

The McLaughlins said...

I am so excited to see that Daylon's surgery went well. Yahoo Daylon! Way to go! I was so nervous about it today so I can only imagine what you were going thru today. WOW Daylon continues to amaze me. I'm so glad that you got to see Dr. Brian again. That's awesome. I hope you can both get some much needed rest.

Lots of Love,
Amber McLaughlin, CA

Jess Edling said...

SWEET! I am so glad things went so smoothly today. I was a total mess just thinking about it earlier. Its nice to see Daylon's tongue back! By the way, I'm totally digging on Daylon's hair. Its so punk rock! ;-) Love you!!

Amy F. P. said...

So glad to hear the surgery went well. I hope you and Daylon get back to warm California soon.

Lisa said...

YAY! What a great day...I'm so relieved everything went well.

Angelique said...

Yay for Daylon! (And you too Mommy!) I totally remember Brian! I got so excited when I saw his picture as soon as I pulled up the blog. He was the nicest guy, and a good doctor. I remember when Bella first came onto the unit. He came into our room pulled up a chair and wanted to hear our story. He really, really, really cares about his patients and the families. A rare breed indeed. If you see him again, tell him "Hi" from us and that we'll always remember his kindness. Hope Daylon has a good night and you guys get to go back to RMH tomorrow.

Tanya said...

Glad everything went well!! :)

sharon kaye said...

Yeah!! More prayers answered. I'm glad you got to see doctor Brian again. I'm sure he enjoyed visiting with you and Daylon as much as you enjoyed seeing him. I hope you get to go home soon.

Annalien said...

So very glad everthing went well. His tongue looks really well and I hope the trauma to his mouth was minimal. Praying for his eyes to also heal. God bless!

Anonymous said...

So very glad that Daylon's surgery went smoothly! On these pictures he looks much more like himself on the head of the blog. And I am delighted to see his naked good-looking hands holding Pooh.

It was very difficult for all of you, but it seems it did his skin good. You are a wonderful mom!


Erin said...

I love these pictures of Daylon...all the hair and he looks great. I think he's looking pretty darn healthy!! Glad everything went well!!

Jan's Blog said...

Hey, Daylon is looking like a little boy, as opposed to a baby boy. Our little guy is growing up.

The magnitude of that last sentence sent me into sobs and made me walk away from the computer to compose myself...but it's true, and it's wonderful. Daylon is growing up!

Here come the tears again. More later...


Daylon is so HANDSOME!! LOOK at all his hair you can play with :) What a cutie! He is getting so big! Glad you got to meet up with Brian. How wonderful to know such great people who have helped you along the way. What a blessing!

I am thrilled that everything went smoothly today! Its looking good. I am glad that they knocked him out after the reaction to the meds...... wanting to scratch your skin off doesnt sound very pleasant!
Hope when he waked up he will like Pooh a little more :)

Huckleberry said...

Wow Daylon is just an amazing little guy....Always redefining what it means to be tough. Glad to see and read about the success of the surgery. Hope we'll see you soon back in Corona tough as ever. As always The Corona Fire Department is constantly thinking, praying, and rooting for Daylon and your family.



Daylon does continue to amaze! I don't know if you saw Wagner yesterday, but he was suppose to give you my number (I don't have your cell), if you want company let me know, I'd be happy to come up and see you and Daylon!
Take care!

Anonymous said...

We are so thankful and so happy that Daylon's surgery went well. He just keeps on amazing us with his strength. He is such a little trooper and so determined, his pictures are so darling. We Love All of You and Jen you are such an amazing mom with all the things you have had to and are going thru, you are a mountain of strength. You and Brian are so amazing and such great parents. Your children are truly loved and cared for. Our thoughts and prayers are with you and baby Daylon that things will go well and that you will be able to come back home to CA real soon. You are really missed. Take Care & God Bless.

All Our love;

Myrna & dwight CA

Gilda said...

It's so wonderful to hear all went well for Daylon. Our prayers are still with you both:)

Kim M said...

Praising God along with you for the best outcome for the surgery!!! Keep teaching those docs, they listen to you!

I look at these pictures and cannot get over how great Daylon is looking. I hate to tell you momma, he has lost that baby look and looks so much like a toddler now!

Okay, specific prayers are for the healing of the tongue, the reaction to subside from the allergic reaction and the pathology report.

Thanks for sharing your little man with us. He is loved.

Praying from Waterford, MI