Sunday, November 20, 2011

PICU - Day 3

Hello my friends. Well, it has been another day of progress for our warrior girl, Kayla!
Donna and I left UCSF at about 8:30pm hoping to get home on the earlier side. Unfortunately, there was a fatal accident on 101 which closed all lanes going North. So, here we are at after 10:30pm exhausted and giggly from delirium while I journal yet another day in this brave girls life.

*To the friends reading this blog who show it to Kayla's class mates, you might want to skip over the pictures. I in NO way intend for this update to embarrass Kayla in any way. It is my therapy and my way to keep track of all of these days. Have I mentioned my life is starting to feel like the movie "Groundhog Day"?

Today we arrived and there was a slight set back... the nurse gave Kayla Valium just before we arrived! She said that her neck was having spasms. Well, that makes her totally out of it. She slept for hours. We were unable to get her moving and start her physical therapy that we had SO hoped to do. Once she woke up though, she did GREAT!!! The good news was that her urinary catheter was out! Also, they disconnected two of her IV's. Still, we are just so blessed to be here recovering. She is one of the lucky ones...
She doesn't look very happy, but we are happy her eyes are open today.
God, I love her!
Kayla with her God-Mommy Angel... Donna
Kayla sucks on this sponge filled with water just to keep moist. It's all she gets until OT clears her and the NG tube is out! :(

Kayla got some amazing gifts from her 2nd grade Good Shepherd and Lu Sutton buddies!
SO AWESOME!!! This is being hung on her bedroom wall right above her bed!

One of Kayla's friends mom, made a book and had it bound. Her son Jack did all the illustrations. It was INCREDIBLE!!! Kayla was alert and listened to me read the entire thing. She LOVED it. Diana, you are so so talented!
Reading Jack's mom's book. I am in awe. Diana & Jack! You are so gifted!!!!!

There was a huge binder filled with art work and drawings from all of her friends and classmates from the entire second grade! Also, there was a DVD from Mrs. Boerio's class (that's the class room that kayla is in) It had all of the kids giving her a message. What a great idea! It was so so touching. Kayla just loved it (and she really misses you rs. Boerio!) It's hard for her to even smile right now, but she was so expressive and made comments about all the cards. "Oh, she's new. He is nice to me. She is Solei's friend" Etc. These will all be keep sakes forever! I have cards and gifts at home too that we are saving for when she walks in our front door again. It's like Christmas over here. You all are so kind! We continue to be humbled by everyone's generosity and thoughtfulness. I wish I could thank all of you individually here but I am about to fall off of my chair with exhaustion. Just know, that I will never be able to thank everyone enough.

Towards the end of the day, Kayla needed to use the potty. Daddy had gotten her to go (with lots of patients and loving forehead rubs) on the bed pan. I can't even imagine "going" on one. Poor thing. But we just didn't know if she could tolerate holding her head up to go on the bedside toilet that they brought in the room. She hadn't sat straight up since Thursday early morning. So, we tried and tried again. This time we just couldn't get her to go. It was agonizing watching her struggle through it all. She was screaming out in pain bc she was just terrified. Her parts are all raw. This is the part of recovery that is intolerable for anyone. The new male RN walked in (Steve). He asked if she is always so "loopy". She had just had pain meds and she was exhausted. My immediate response was, "Well, she's been on a lot of drugs". Kayla sat up... eyes got HUGE and she started to SOB, "I don't want to be on druuuuuugs!!!!! Noooooooo!!!! NOOOOooooo DRUGS". I quickly remembered she is in 2nd grade now and they have taught the kids all about "say NO to drugs". DUH. I felt so bad. We had to calm her and explain the difference between hospital drugs aka medicine and "drugs". Oh boy. She was at her tiny wits end for sure. So, after many man maaaany tries, we asked her if she would feel more comfortable on the portable potty? We explained how her head would probably hurt and she would have to support it mostly on her own, but that she could "go" like normal! She was desperate and said yes. SO, with the help of a team, we did it! We got all the cables moved. She sat up straight and we had a #1. Like I said... BABY steps.
A big scary step. Kayla holding her head upright for the first time unassisted!

I forgot to mention that earlier tonight, one thing that happened was that her NG tube must have started to come up a smidgen in her throat causing her to gag. She threw up and her tube was coming out of her mouth. It was scary! I didn't know whether to pull it out or push it back down! Thank goodness the nurse was right there. We had to take it out. Upside to this is that it's out. Down side is she can't eat anything until she has her Modified Barium Swallow Study. They need to make sure that she won't choke on food (remember, the reason she had the NG tube in the first place?) Ugh. SO... we will push hard in the AM that the OT gets in there and they get that done. We are praying she doesn't need the NG tube replaced. If I have to watch her go through that again, this momma is going to crack! Tomorrow at noon, it will have been 24 hours since they clamped the ICP drain. If all still looks good, she can have the drain removed!!!!!! That is the last thing keeping her in the PICU. She can move back to the regular floor while we await the results from the biopsy and just recover.
Bye-Bye drain!!!

We are hopefully optimistic that we will be home on or on the eve of Thanksgiving. That would be one heck of a thing to be thankful for.

Good night all! We love you!!!!!!!


Tomorrow, please pray that OT clears her and she can get back to normal food!!! Ok, I think this about sums it up. Could be that it's almost 11:30 and I'm half asleep. Sorry, Maybe I should find a way to go to bed early and wake up early to post. At least I would have energy.
Signed, Delirious.




14 comments:

  1. You raise me up. God bless you all. I do not have enough words to express what my heart feels. Your words and photographs are so beautiful and revealing of your truth and strength with the Holy Spirit. You are all amazing grace. Constant prayers, gratitude and love, Mary Hoburg

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  2. Annie,
    You are a very strong woman, Kayla is so blessed to have such wonderful parents. Please take care of yourself so that you can take care of her. I will keep you prayers going for you all.

    Love
    Yolanda

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  3. To open deeply, as genuine spiritual life requires, we need tremendous courage and strength, a kind of warrior spirit. But the place for this warrior strength is in the heart.
    Jack Kornfield, A Path with Heart
    You are heartfelt warriors! May today bring more and more healing steps towards home for Thanksgiving...Ginny McGraw

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  4. Baby steps! We'll take them! She is doing great! Did I mention to you that Dr. Gupta is a very close friends daughters doctor too? Small world. She couldn't say enough about that man! High Praises all the way! This whole thing will be over soon. You are through the hard part for sure. It's so nice to see her awake and showing her true self at times to you! Thanks again for posting! I wake up every morning and run to the computer for the updates! Love to you, Denny and Kayla.

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  5. Thanks once again for posting so late at night. I know you must need to tell your story before you can rest and go to sleep. I am amazed by your strength. Prayers still flowing here. Love, Susie

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  6. Kayla is amazing! We are so thrilled with every baby step she takes. Annie, Thank you for keeping us updated. You and your family are truly inspirational. Love, Barbara, Claire and Chas.

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  7. Michelle MacPhearsonNovember 21, 2011 at 9:29 AM

    Annie & Family,

    My aunt Eileen told me about Kayla and sent me this link and I wanted to express my sincerest, deepest get well wishes for Kayla. She is SUCH a strong little girl!

    She's in my thoughts and prayers, as are you and Denny and Anthony!

    Please let me know if there's anything I can do to help - I'm sure you've got gobs of wonderful people around you already lending a hand, but perhaps there's a tech question or problem with this site I can help with. Don't hesitate!

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  8. Annie, you and Denny are awesome parents. I love that you are totally in the moment and address each of Kayla's needs as they arise. I appreciate your updates and glad you have kept your sense of humor - it will help you get through this. I hold you in my heart and pray for Kayla's continued recovery - and that she will be cleared for solid foods today. love, Jane

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  9. Sending lots of great thoughts and prayers that all is a "green light" for today!! Hang in there - these posts are great, but please try to take care of yourselves too - you are all in our prayers every day.... Joanne and Joe

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  10. Sending our prayers and best for Kayla at this time .
    Keep up the great recovery . Great pics on a great progress,
    Val and Greg

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  11. Hi Annie,

    I love reading the great progress that Kayla is making every day. May God conitnue to give you guys the amazing strength that you have exhibited throughout this entire LONG process. We will continue with our prayers. We can't wait to see you guys back home and give you guys VERY BIG HUGS. You guys are constantly on our thoughts. I hope you get this message. I'm not a Techy and have had several unsuccessful attempts. Jean showed me this new way. Lets hope it works. I guess if you are reading it IT WORKED!

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  12. Keep strong my friend. Sending all good thoughts your way. xx Cate

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  13. Still hoping that those pancakes come soon sweet Kayla!

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  14. awwe. That no drugs thing was so cute. Poor thing. Yay for using the potty. She is making great progress. Soon enough this will all be over, nad you can just look back and see how far you have all come. It has surely brought your family closer together!!

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