Saturday, November 19, 2011

Day 2 Post-Op

Today we saw some great new progress in Kayla's recovery. We had a rough night last night trying to get the NG tube placement to pass the x-ray test. They take an x-ray to make sure the tube is in the right place before they can give her any food. It showed an air bubble and it took forever to get the doctor in to ok the "odd" bubble before she could finally benefit from that most uncomfortable tube being placed. Finally at around 1:45, Kayla got her first smidgen of nutrition. She hadn't had any food since Wednesday night. So on top of all the other pain, the hunger was excruciating. Not only for her, but for us to witness. We all felt so helpless. Denny was, as always, an amazing advocate. He pushed and pushed until he got that x-ray confirmed "ok" and refused to sleep until she got food.

By the time Donna and I got to the hospital today, we noticed a huge change in her coloring and her orientation. She was still sleeping, but we knew she wasn't hungry. Count your blessings, right?

Lunch time rolled around and Thalia and Carolyn brought Anthony by the hospital for a quick bite to eat and a visit. It was SO great to see him. Denny hadn't seen Anthony since Monday! (today is Saturday... right?) After lunch, Thalia's husband, Bob met us to say hello and offer support.  We all thought it would be cool if Anthony could run outside and see Bob's Fire "car" and get to wear his gear! He LOVED that. That was one of the highlights of the day.
Look at this ADORABLE Assistant Chief!

On the day of Kayla's Sedated MRI at UCSF (Tuesday) we met an amazing family in the waiting room. They have a little girl, Amy, who is 10 and also had a brain tumor. They were also having an MRI done. It was the day before Amy's surgery by Dr. Gupta! Amy's tumor was in the frontal lobe. Her mom and dad were so sweet and her recovery was, and is, a huge source of strength for us in this process. Being that her surgery was one day before Kayla's, we had an idea of what we might expect after surgery. Well, sort of. Now we are realizing that Cerebellum surgery is a little more complex and a much harder recovery. Amy was walking around the day after surgery! Today, she and her family will begin their journey back home to Oregon.... cancer and tumor free!
Amy, you look SO pretty here! I do still love the pony-tails. Dr. G could have another profession if the whole "brain thing" gets old! ;)

We had AWESOME posters and get well art dropped off today by my friend Tracy's 6th grade class! (Tracy, we hung it on the wall where she can see it) Thank your kids for us!

The Art line has been removed. It was a huge annoyance. A constant BEEEEEEEEEP while everyone "tries" to rest.

We gave Kayla a sponge bath today. She was awake for at least an hour straight!!! She even said she didn't want to sleep and would tolerate a little pain to stay alert. SO, no more Valium! That is awesome. Donna, Denny & I were able to massage her muscles and stretch her arms and legs finally. She was so stiff at first, but then she was determined to help and try to stretch by herself needing only a little assistance. She was brave and so so so determined!!! The nurses just keep nodding and smiling every time she gets in her little kayla mode. It's incredible to witness.

Kayla went from 1:30-8:00 with NO pain meds what so ever. That was HUGE.

We were able to move the inter-cranial pressure drain (it drains the extra cerebral spinal fluid out of her scalp) up! We started at pressure level 5 and now are up to 25 and she is doing GREAT! The ICP is one of the main things keeping her in the PICU. 

Her incision is healing really well. We got to see it today for the first time as we gave her the sponge bath. I snapped a quick picture because I KNOW kayla will want to show it to all her friends. She is a warrior. She has survived brain surgery. Not many people get to say that in their lives. 
She was actually comfortable during this picture... believe it or not! Ouch, right?

Tomorrow we are hoping that once they clamp the ICP line her head pressure stays the same. They will monitor her for 24 hours and then if all is well, they can move her to the regular floor! I have to admit (as odd as this may sound) that this is almost sad b/c we have become very close to a couple of her nurses in the PICU. They have been incredible.  

Ok, off to bed and ready to see our little girl even more alert tomorrow. She is doing great. The big hurdle is done and we are just so grateful to God that she made it this far and her spirit is untouched! 

ps. Thank you for the socks we have gotten so far. I am optimistic that some pink will arrive. Denny is happy with any colors really. The brighter the better!  
Sleeping Angel


  1. awwe. Poor girly. She will get through it. Thanks so much for blogging. It allows everyone to know whats going on. That does look painful. Poor thing. That is awesome they did not have to shave her head. For some reason I thought they would have too. Her scar will be covered by her hair.
    Aj looks so cute. Looks like he is having fun.
    It sounds like you are learning a lot about all the nurse terminology. Its kind of fun lol. It sounds like she is doing awesome, and pretty soon she can be off that NG tube and eating real food. That's fantastic she got her drain out, so she can move around more. This all amazes me so much. Keep up the good work and staying strong =)-Krysta

  2. Wow! Such great news! I'm so happy that you find time to update and keep us all in the loop. She is on our minds 24/7! She is AMAZING! They really didn't have to shave very much of her hair. I know this makes Mommy happy! lol Keep up the good work and I'm so glad Donna has been able to be there for you. She is amazing too! My love to all. xoxo

  3. Wow big day! OUCH is right, but they did an incredible job at the incision point, dont' you think, I mean it's 2 days post op and I don't think you'll ever be able to see it! Boy does she have a story there later! And you're right Annie the pigtails, he could TOTALLY have another profession! I am so glad she is more comfortable and is doing so well; the lord heard the Novato communities and abroads prayers! I miss you, haven't been in contact I wanted to allow you this time, w/o having another person to get back to, but you know upi and your family haven't been out of my mind. Let us know when we can visit! Jayna

  4. So amazing and brave! It is such a relief to hear how well she is doing. You are all so strong. You are so blessed to have Donna, and Kayla is so blessed to have you and Denny! I am so touched by your accounts of Denny's dedication to his little girl. Love to you all! Arianna

  5. Annie, It is wonderful that you take time you could be sleeping to post to us. I loved the pictures of Anthony and Kayla. She does look like she is sleeping without pain. I'm so glad they were able to get the feeding tube to work. Give her a kiss for me. Susie

  6. Kayla continues to be in our prayers. I am grateful for your posts; that is a great way to keep everyone informed. LOVED Anthony's pix in Bob's "white" helmet!; some photo's for him to share at school, I'm sure! Love the photo of Kayla sleeping; one thing is missing....Kramer (the cat)! I am sure he is missing his sleeping buddy....I pray that it won't be too long until she is home! Hugs to you all! Gayle

  7. Give Kayla a big kiss from her cousins! She is looking so good and she is so brave! We are so glad she is in such good hands at UCSF! I found Denny pink socks--but I don't know how to get them to you, maybe I'll mail them. Love you alllllll!

  8. Thanks for keeping us all up to date on Kaylas remarkable progress .
    She looks amazing in these latest photos and looks like she is more mature .She is an amazing little girls and she can be proud to have parents like you and Denny who through the help of God are being strong for their little girl
    Please give her a kiss from all of us .
    Valerie and family

  9. What an amazing spirit Kayla has. So inspiring to hear how well she is doing and what a strong little girl she is. I don't think I would have the strength to forge ahead like she does. Thanks for keeping us updated. Kayla is lucky to have such caring patents and you two are lucky to have such an awesome daughter.

  10. Healing thoughts, prayers and love going out to Kayla today from the Unitarian Church, Devon, PA, where her name was said with love and caring during each service. So many are with you all in spirit, hoping the good news continues to come in. It is a beautiful fall day here, as we keep you all in our hearts. xxooAuntie Ann and all

  11. We are praying for a full recovery for sweet Kayla and strength for the rest of the family. Thanks for keeping us all informed. All our love, the Gouldy Family - Chris, Jared and Jeff

  12. We are all so happy to hear that everyhing is going well. She is an amazing little girl! I was just reading Ainsley the latest update and when she saw the photos she said "oh, poor Kayla, I hope she's ok, she's so nice, i like her". Keep up your strength you, and Denny are amazing as well. Thank you for all of your updates, we think about her every minute, and are grateful to be kept up on her progress. Love to you all, Lannette

  13. Thanks for the post. Glad to hear there is continued progress. Love to hear that! Annie, how are YOU holding up? Hope you're getting some nutritious food and are able to get some sleep on a bed. Those chairs that convert into "beds" are awful, but I guess if you're tired enough you can sleep anywhere!

    Those pictures of Anthony are adorable! So glad he's with his buddies and is having lots of fun. Thinking of you a lot today and looking forward to the progress updates. xoxo Allie

  14. I'm sure it still feels so surreal...but man, are you doing a great job taking it all in and including all of her (and your) admirers in the experience through this blog...and at the same time capturing the whole thing so well for Kayla. She's gonna feel like such a hero sharing these tales and photos with her adoring friends, her kids, and her grandkids and great-grandkids as she looks back on this crazy adventure she once had!

  15. Thank you so much, Annie for posting, you are so thoughtful to tell us what is going with the warrior, Kayla. She is amazing and we think about her all the time, always wondering how she is doing, so these blogs are awesome. So happy that she is eating and that pain meds have decreased a lot. Also, those pictures of Anthony are priceless. Miss him too! I got to go in search from some Nike or Under Armour pink socks for my good friend. Maybe some matching ones for all the Dehnerts! Love you guys!!

  16. Kayla's spirit just seems to shine through everything that she has endured. Thank you so much for keeping us posted. The pictures are wonderful and it looks like Anthony will be fire chief any day now. What a great circle of friends and family you have. Take care of yourselves too!

  17. Go Kayla Go!!! What a brave, strong, amazing girl you've got there!! So happy to hear to that she is recovering so nicely. Been thinking about you all everyday. Sending you big hugs :)The Chabans