Wednesday morning Annalise and I headed up to Phoenix Children's Hospital nice and early for her surgery. They had called the night before and asked us to come 2 hours earlier than we had planned, so I made a few arrangements and got to PCH by 8:30
Our home away from home for a couple of days.
All ready to go see the doctor
Annalise was excited to get her "bracelet" that had two princess stickers on it.
With Dr. Duck. They gave her this animal when we checked in. The man who gave it to her said it was a goose. She said, "It's not a goose. It's a duck!" Dr. Duck
Wearing pants for the last time in 6-8 weeks.
I had to take pictures of her cute, soft, little legs before they got covered with hard heavy casts.
We then spent time checking out all the toys.
Annalise's new friend, a very sweet little girl who was waiting for her surgery also.
They played Candy Land and then tea party together. So cute!
Once they called Jersey back, Annalise played with just about every other toy there was.
We actually ended up having quite a while to play with toys because Dr. Shrader had two ER surgeries that came up. Finally at about noon, only a half an hour before our originally scheduled time, the nurse came to get her.
She had her dog (Mya) and her duck ready to go with her. This was the hardest part for me...always is. I walk with Annalise and the nurse to a door. Then I give Annalise a kiss and they head one way and I head the other.
The surgery lasted just over an hour. She did great. She woke up for about 2 seconds in the recovery room
and before long they had us up in her room. Room 8147. This is the first time that we have been in the new part of the hospital. It is so much nicer than the times we have stayed with Bryce. The rooms are much bigger, we have the room to ourselves, and there is a bathroom and shower that I can use as well. So nice not to have to walk down the hall every time nature calls!
The view from our room is also pretty nice.
Annalise slept until about 3 pm. Then woke up and was ready to play.
Aunt Sheri came and brought Annalise a balloon and a book. Annalise enjoyed playing peek-a-boo with Aunt Sheri.
Annalise also loves holding on to the balloon and then letting it go and watching it go up to the ceiling.
Also, my friend Ann stopped by to say hello. I met Ann and her family one time when we were staying at the Ryan House. She is here at the hospital with her son Jack. She is the one who I first heard refer to this place as hotel PCH. I like that! When she came by, she gave me this necklace. I love it!
After work, John came by to stay with Annalise so that I could go to Ryder's End of Life Celebration. It was beautiful. Yesterday would have been Ryder's 3rd birthday. It posted sideways here, but this is the program they had there. Denise wrote the poem. While at the celebration I saw many mutual friends. It was a lovely night and I am glad that I was able to get away for a bit and be with Les, Denise, and their friends and family to honor such an incredible little boy!
While I was away, Annalise colored with her Dad.
Also, her pain medicine began wearing off and she began having some pretty bad muscle spasms. She threw up twice, once with John and once with me.
Annalise's boots. She choose pink and the lady who casted her decided to add the purple around the bar.
She keeps telling me that she wants her boots off! It is so hard to see her so uncomfortable.
My poor baby had a really rough night the first night. They ended up having to give her Morphine in addition to all the other pain medicine she was already on.
It did help though and finally she was able to get some rest.
It is now about 3am, Friday morning. Annalise woke up about an hour ago in some pain, but other than that she has had a pretty good night. Luckily they are keeping on top of giving her the pain meds and that is helping a lot. I really like the night nurse tonight. Not trying to be mean, but in my opinion she is much better than the one we had last night. There is definitely a difference between nurses!
After getting Annalise settled back to sleep, I have not been able to get back to sleep, so I figured I would get up and finish off this post...then hopefully get a little more sleep before the sun and my daughter wake up.
Annalise woke up yesterday morning around 9 o'clock. I figured she would take a nap during the day, but she ended up staying awake until almost 8:30 last night. She had a few rough/painful moments through the day, but overall she seemed pretty comfortable...relatively speaking.
Regression is always a concern with these kiddos because of the Leukodystrophy. The only thing so far that I have noticed with her since her surgery is her speaking. She is still babbling away just as much as she was before, but I am really having a hard time understanding her. I hope and pray that it is just because she is on medication and that soon she will be back to her normal.
Watching some t.v. I think that keeping this girl entertained is going to be the toughest part of the next few weeks. She doesn't really like to sit and watch t.v. or movies a whole lot, so I am going to need to get a little creative. Today we spent time reading books, coloring, and playing with some toys.
We even got a few smiles out of her today.
She also discovered how to raise and lower her bed.
She thought that was pretty entertaining.
She also took lots of pictures with my phone. Most were pictures of the t.v.
Our view at night.
We were hoping to go home on Thursday, but they decided to keep her one more night to make sure she made it through the night without the extra pain medication or any more throwing up. So far, she has done well, so hopefully we will be heading home later today. I have friends who have had to spend many days/nights at a time in the hospital with their children. I admire them and their strength so much. We've only been here two days and I'm already going stir crazy. Thanks to everyone for the visits, texts, prayers, and well wishes. We have felt your love and thank you for that! The prayers have been especially appreciated! The strength and comfort that comes when so many people are praying for you is impossible to describe. It has been a huge help to my baby girl and this very anxious mom!