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.
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.