Monday, November 14, 2011

The Next Step

Tonight as I sit here right now, I find myself in a state of disbelief that this is all really happening right now. Anthony is asleep. The house is quiet.... too quiet.

Back track to 3pm-ish:
Denny and I made it into the city and to UCSF with tons of time to spare. We got our parking spot and headed in. For those of you who have never been, it's HUGE!!! I mean HUGE. We walked all over the place getting acquainted. (by accident because we got a tad bit lost. Oops) We arrived at Dr. Gupta's office about 30 mins early. The front desk girl who scheduled us this morning was lovely and kind. 

They led us back into a little exam room and we waited to see the doc. It only took a few mins and he entered with a smile. First impression: What a NICE man. He sat down and went over the thoughts he had after reviewing her MRI report and disc. He does have a good idea of what he wants to do for treatment but won't be sure until after more tests are run. He also said that she has some swelling due to the extra fluid around her brain right now. He didn't feel comfortable letting her go home because of it and told us we would be admitting her after our visit. We told him we were ready and had her suit case in the car. We had a feeling!

 The ESTIMATED date for surgery will *most likely* be Wednesday or Thursday. He has a lot of tests to do and won't know anything until they are run. That brings me to the next update. The plan is to do some very early tests in the morning including a sedated 3D MRI. That way they get a very still and accurate picture of exactly what he is looking at. If all goes well after surgery and she doesn't need too much physical therapy, we are looking at a week of recovery time after surgery spent in the hospital. If she isn't recovering as fast as she needs to, she stays longer. If the biopsy comes back and isn't benign and more procedures are needed, she stays longer. It all really depends.

So, Denny & I walked our little girl over to pediatric admitting and checked her in. Unfortunately the rooms are packed right now but that should change soon. For now, she is sharing a room with 4 other patients (and their parents). So, that's at least 8 people in her room and 4 TV's. Denny is going to take the fold out AWESOME bed (haha... riiiight) next to her and try and get some zzzz's tonight. She had a quick visit from one of the docs who is on Dr. G's team. He did some tests with her and asked all the same questions again. They sure are thorough there. I love it! I took some cute pics! I will attach them onto this post.

To those of you who are wanting to visit or come during surgery. I can tell you this now. They are very strict about visitors (especially before surgery). They want to keep her at the lowest risk possible for infection. For now they are strongly suggesting that only Denny and I be there.  I can tell you that the room they are in for now is so packed, I was in the way!  So, I will keep doing the blog and taking pictures. I will update as much as I can. For now, I am going to go finish packing a bag for Denny. I kept telling him all day he should be packing. Mommy's intuition. For now they are stocked on lots of books and crafts and crossword puzzles. They do have internet access. Oh and Den says that there is even a play station hooked up to each TV! They will have lots to do to pass the time. I will be there as early as I can be in the morning and update the blog when I can!
(and I finally figured out this picture thing!!) Ps. we are good on food. Anthony has an army of people wanting to help. We are so grateful to all of you who are in our lives. THANK YOU!!!!!!
She LOVES the bed. She wants this bed at home. Craft-Matic adjustable???

Dr. G's colleague doing more tests

She likes this hospital already!

Good night everyone.......... zzzzzzz


  1. Thank you for the update--and for sharing so many of Kayla's smiles! Restful, sweet dreams to each of you.

  2. So happy to see her smile and adjusting to home away from home, I love this little girls spirit, just like her parents, always brings a light and a smile into every room! LOVE KOLLEEN

  3. So sorry to hear things have become more urgent with the swelling but glad you are with excellent doctors and feel 100% confident about the care at UCSF. Also, that Kayla seems to be taking this very well. Glad to see you are able to live in the moment and remain so positive. I would expect nothing less :) Hoping surgery goes smoothly and her recovery is quick. We'll be thinking of you every moment!

  4. Way to go Techy Annie! I kept hitting refresh last night, but went to bed too early :-) Thank you for keeping us all updated, and for such great pictures. UCSF is the best. Lots of love and prayers, Christine

  5. Thank you so much for continuing to post updates. We love all of you guys and care very much about everything that is happening especially the pics where Kay is her usual beaming self. We also do not want to overwhelm you with contact. I am sending you hugs right now. Just so you know, the anesthesia is scary for parents at first. I remember the first time Carli had it I was absolutely terrified. She came out just fine and was then awake all day. It was like nothing happened. The last couple of times she came out of it a bit cranky. If it wears off too suddenly the kids can have a rough awakening. BTW: Carli hopes that Kayla gets cherry flavor on her mask for anesthesia...she is convinced it will be Kayla's favorite flavor. Love and kisses to you all.

  6. Annie ! I'm loving these pics and the updates. Thank you so much for keeping us informed! I tried to "follow" based on my google account and didn't receive an email on this update :(. I found it on facebook. Either way, I guess I'll just keep checking FB! Geoff and I really wanted to come today to visit her. I have minimum days at school this week b/c of conferences, so this week would be better to come visit then the week after surgery. If it's not a good time, please text us and let us know and possibly we can try to come over the weekend at some point. Send our love to her and Den !! LOVE YOU!

  7. Love seeing that awesome smile of Kayla's. That tells the story of her amazing attitude. It made me feel so good to see that she is adjusting great, so proud of her. It also made me feel good to see and read how she is in great hands with dad at her side and the very experienced team of doctors there. Thank you for sharing the pictures and the blog with all of us. Our family is sending you big hugs and a ton of positive thoughts. We love you guys!

  8. Annie ,
    Well I hope all is going well with you and your family .
    My family gets updates about Kayla and we are all rooting for her .
    We send only the best positive thoughts your way.
    Put your trust in Gods hands ,Kayla is one of Gods special children .