Friday, November 18, 2011

Baby Steps

Let me start with some good news. The MRI came back that all of the tumor was removed! This is AWESOME! Kayla is making slow progress. She is now off of her oxygen and breathing on her own. She is in and out of sleep. I can now see the positive side of medically induced coma healing. When she is awake, it's really sad and hard to watch. All of her tubes are bothering her a lot. Kayla continues to make us laugh even at the toughest moments. She will wake up and mumble something quietly. When I jump up to say, "what sweetie?" she screams out what ever it is she was trying to say. She is obviously frustrated that we aren't telepathically connected. Today she shouted out at us as we were talking to the doctor, "BE QUIET!!! STOP WHISPERING!!!!!" Then, "Daddy is talking too much. Always talking too much!"  It was so hard to laugh quietly at that one.

That leads me to my next update. We had an OT (occupational therapist) do a swallow clearance test on her to see if she was ready to start eating yet. Unfortunately, part of the brain where she had her tumor was the part that controls the ability to feel when you need to cough or swallow... (and speech and balance).  We aren't sure about her balance yet because obviously she hasn't gotten out of bed yet. Her speech luckily is great though! They don't feel that she is quite ready to eat food on her own as of yet. This will change soon.  For now, they have decided that the best way to get Kayla some nutrition is through a NG tube. (a small tube that goes in her nose and feeds to her tummy) We still are waiting on clearance from the doctor as to if the x-ray is cleared and she can start getting food. She does complain a LOT when she is awake about being hungry. She hasn't eaten in 2 days. Her pain is being managed as best as it can be. I know she will be so much more comfortable with a satisfied belly.

Donna (Kayla's God mommy and my best friend for over 30 years) came up from LA to be here with us through the surgery and all the critical stages following. Her strength and knowledge in the medical field as an RN have been such a blessing to us as you can imagine. When they are describing what they want to do next to her we just glance at Donna to see if she is smiling and nodding. If she has a worried look in her eye, we quickly stop and nothing happens until OUR team is happy. It's been such a huge help to us. The staff in the PICU is allowing Donna to stay in there with us during the day which is so awesome. Actually, I think "most" of the nurses we have had, love her! A few are trying to get her to move here and get a job at UCSF! Even at one point today, Kayla was crying out for her asking if she was still here. It's no wonder... she has been a HUGE help in all the critical (and painful things) in this process. Like helping to gently roll her over and reposition her. It's so nice to have her expertise in making sure our baby is always comfortable in a time when NOTHING is comfortable.

Denny is a trooper. He won't leave her side. Donna and I make him shower, take breaks and get naps. Today she stayed with Kayla while Denny and I had lunch and then dinner later alone. So, no one needs to worry about us taking care of ourselves. We are doing great on that end. It's been the perfect team.

On a serious note. Since all of you are asking ways to help, this guy:

 NEEDS SOCKS!!!!!!!!                       BADLY!!!!!!!!!!!
We are taking up a new charity collection for socks for this amazing dad. He is a size 13. He prefers ankle socks. He isn't picky about the color. He just prefers that they don't have holes in them. In honor of Kayla we are secretly requesting "pink or purple" or socks of color. You should see the toes. I am sparing you the details on that end. It's sad. Really really sad.

Anthony is doing awesome and in sleep over heaven with is girlfriend Amanda! I can't thank my friends enough for keeping things so normal for him. That gives us strength and power.

Tomorrow we expect that Kayla will continue to heal... her tube feedings will help her to get stronger! She will become more and more like the Kayla we had 2 days ago. Thank you all for continuing your support in every way. My favorite quotes right now are:

What is "strong"? 
                               What is "normal"?  
                                    and   KNOWLEDGE IS POWER!!!!


  1. Hi Annie and Denny,
    Sounds like things are going about as well as could be expected. Such great news about the surgery! I am amazed not only by Kayla's strength and courage but YOUR's also. You all have been through so much in such a short amount of time. Patience is key but you guys are already practicing that much better than I could ever expect. I'm so glad you have so much support both at the hospital and from friends and family away from it. I am often at UCSF for work dropping off or picking up patients. If I'm there at all next week and Kayla is out of the PICU I'll try and say hello if you want. Hang in there and keep doing what you've been doing. It's working!!---Love Matt

  2. Aww. Poor girly! She will get through this. That must be hard to see. But she is strong and will heal. She sounds to be doing pretty well considering what she went through. That is great you have so much support!! Hang in there, and all will get better. - Krysta

  3. Dear Ones, How good to be on the other side, the healing, every-day-gets-better side! And great to read that Donna is there with you...what a gift. NG tube - I remember that, Will's swallowing ability also compromised. After trying many things, I discovered watermelon as the first food he was able to manage and it helped him relearn swallowing. Though every situation is different, thought I'd pass on this memory. Thanks for letting us know about Anthony. What a huge help from yet more wonderful friends. Being across the country makes this hard, but now we can help...socks! Love to all, Auntie Ann

  4. Kayla really does look great. I know the tubes are scary and they don't feel good...but she really looks great for a trooper that just had surgery two days ago. You and Denny look great too. I know you both must still be exhausted and learning this much hospital jargon must be at times frustrating. You are both amazing parents and Kayla and AJ are so blessed to have you. I am glad that Donna is with you and able to help you advocate for Kayla. Donna is truly an Angel on Earth. All of the girls missed Kayla at the Brownie meeting last night but believe me she was there in our hearts, on our tongues and at the tips of our fingers. You will love to see how much her friends love her and miss her. The pictures and videos they made for her are priceless. I will get right on that sock request this afternoon. I am determined to find the pink or purple! Here in the Wu household we are continuing to think of our friends the Dehnerts and are willing positive outcomes. We love you guys!

  5. She looks amazing, hahaha "daddy's talking too much" really...........AJ looks content, Thal said he was so exhausted yesterday poor little man, glad he's enjoying some down time with friends. HAHAHA and I see your humor has stayed in tact, all makes me smile. I am so happy you have Donna by your side, I know how much she means to you and having your best friend advocate for you in the terminology and procedure based day must be so reassuring. Thank you Donna! And a reason to buy "Denise" pink and purple or crazy socks OMG Jayna LOVES THAT! We are all thinking of you, got a text at 6:00AM this morning and ran downstairs from my bed but it wasn't you. The Pahland household hasn't stopped thinking of our dear K and our friends, we love you!

  6. I am so inspired by your faith and strength. Your love and devotion is moving mountains! Kayla truly is in perfect hands. What an exciting update that she is slowly healing and returning to herself; our hearts are SO happy to hear that. We have not stopped thinking of Kayla and will continue our constant prayers. Much love to you all (and a special virtual hug to Kayla from Antonia who misses her so much!) xoxo Lea & Family

  7. You all are constantly on our minds. Thank you for keep us updated on sweet Kayla. The strength you and Denny have shown has been inspiring. And your humor, well I am not surprised! Your posts have made me cry and laugh within seconds of each other. Thank you to Donna for taking such good care of Annie, Denny and Kayla. Noelle missed Kayla at Brownies, but Kayla was never out of their thoughts! Can't wait for Kayla to see what they did for her! Continued prayers for a speedy recovery for your amazing girl. Much love to you all. Xo

  8. Never, ever not in our thoughts! We think about you all constantly and are constantly wondering/praying that everything is going okay!!! We love you!!! Too funny about Den and his socks. My mom and I may come to the hospital tomorrow. :) Can't wait to see his pink socks in action!

  9. This is all good news, Annie, and am so relieved to know that she is responding so positively (and, yes, even the "talking to much" part is a blessing). You & Denny are wonderful parents & doing such a good job of maintaining some "normalcy" for Anthony. My mom always said & I agree 100% that normal is whatever is happening today. Am also so glad that your dear friend Donna is with you and that she is such a wonderful medical advocate. We all continue to pray for quick healing and a benign pathology report. Sending so much love & hugs to you and praying always.

  10. One of the signs that a patient is getting better is when they get 'grouchy' or talk back. So another good sign of Kayla's progress is her definite proclamations about the talking! Could be her sense of hearing is heightened.....either way she continues with such an important skill: to identify and ask for what she needs/wants. Life lesson many adults never learn!
    Checking this blog is the first and last thing I do every well as 1-2x during the day-----so thank you for taking the time to not only keep us informed but also for sharing the journey.
    Praising God for the continued good news and steady progress. Prayers to both He and His Mother (who intercedes for us to Him) continue for her full recovery which includes the 'benign' diagnosis; and Angel prayers for them to surround her, support her, protect her plus assist with her strength and comfort needs.

  11. We are so happy to hear the good news. It is wonderful that they got all the tumor. I also think that Kayla talking and irritable is a very good sign. I know you have said baby steps and it is so true. It is wonderful that you have Donna with you and that she is so knowledgeable about the whole process and helps you get thru it. Bless Denny's heart I bet he gets tons of sock. I think I need to be creative and come up with something else. You are totally in our thoughts and prayers.
    Susie and Rus

  12. Kayla is so awesome! It won't be long before she is eating her favorite foods. I promise the prayers won't stop - for all of you.

    Claire loves the picture of Anthony and Amanda. I also have a beautiful picture of Anthony and Denny's mom at GSLS grandparent's day on Thursday. I will send. Take care!
    Love, Melissa

  13. They got the whole tumor!!! That is great news!! I will be on the look out for pink and purple socks in men's size 13...hmmm...with all of us searching someone is bound to find some.

  14. Annie, thanks so much for the update. Denny's sock situation is clearly dire and I hope the sock police do something about it ASAP!

    I'm really glad Kayla is talking; that's super news. She's such a champ! From what you're saying about the tumor being on the part of the brain that controls balance, speech and swallowing, it sounds like it was near the brain stem? Regardless, we're all happy to hear they got all of it.

    Brains are amazing; they do take a long time to heal, but they do heal. This experience will develop your mastery of patience. It will get better from here on out! xoxo Allie

  15. Stay strong Kayla!:)
    You are the most remarkable girl I have ever known!

  16. have you heard anything about the pathology of the tumor?

  17. What wonderful news they removed it all successfully with one surgery and that she's breathing on her own and talking. Eating is just around the corner if not already. She is so so strong, so brave, so courageous. You two are rocks. What Mazing parents she was blessed with. Your day will come that this will all be over and you'll sleep in worry-free peace . It will come. This will all turn out ok and all be a memory and story to share of bravery, strength, faith and love. You are good good people. Good things happen to good people. We will all be at church tomorrow morning with prayers for Kayla and your whole family.
    Love the socks request!! Better request something else too or you're gonna end up with 3 dozen!! There are just sooooo many people pulling, praying and thinking positive for Kayla.
    Hugs and love, Celeste

  18. Annie, I am amazed by your strength during this difficult time. Thanks for taking the time to keep everyone updated. It sounds like Kayla is doing as well as she could be. She is one strong and brave girl and I can see where she gets that from. We continue to think and pray for you all.

  19. Annie you and Denny are amazing parents!! Seeing Denny sleeping on that fold out bed reminds me of when Hank had his tumor surgery eight years ago at UCSF. I can totally relate to what you guys are going through. I don't know how you are finding the time to post everything on the blog. I think it's really great that you are keeping everyone up to date about Kayla. She is truly one of God's little angels and I know she is being watched over by Him. We are continuing to pray for Kayla and all of you. And one of my good friends who you don't know is praying too. Tell Denny we have some socks for him, but they arn't colored, they are white. Is that OK? I keep buying new socks for Ryan and he never likes them, even if he picks them out. He just wants to wear his old ones. So I have lots of ankle socks size 13 if he wants them.

    Luv you guys, Naomi, Hank and Ryan

  20. You guys are - one amazing family! Your strength, and positive outlook, and of course that great humor is just inspiring. Thank you so much for updating us all, and keeping us in the loop, as there isn't a second that goes by that we aren't thinking of you guys. Sweet little Kayla, still looks as beautiful as ever, even after going through what she had endured. What an incredible little angle you have.
    Love, Paige

  21. You guys are always in our thoughts and Lannette and I talk about Kayla often. Your strenght through this has been nothing short of amazing. I don't know how you do it. Tell Kayla we are all thinking of her and can't wait to get her back to Novato!!
    Ross, Lannette, Ainsley and Lily

  22. So much love to you Annie, Denny, Kayla & Anthony! I know everyone else has already said it but you two are AMAZING parents and should be so proud of yourselves as well as especially proud of Kayla. She truly seems to be one VERY SPECIAL little girl (or should I say little soldier) and Robert and I pray that you will receive good pathology results. We check your blog morning and night and are so grateful that you can still find time to update everyone since you have such a full plate right now and must be EXHAUSTED!!! I know she will get stronger every day and with her fighting spirit, I'm sure everything will turn out just fine. You are so very lucky to have such a huge support network and I know we don't live
    that close anymore but if there's anything you need at all, PLEASE don't hesitate to call. Annie, you and your family are in our prayers, and we love you so much!!! Cindi & Robert Johnson

  23. SO, SO THANKFUL that all of the tumor was removed. This is gonna be tough but she WILL recover. XOXO
    - Jennifer Pritchard