Beanie's Blog: And we're counting up...

Yesterday was such a roller coaster. I was terrified of being able to wake up at 5:45. Silly me. I barely slept the whole night, when I did it was dreams that I let Ainsley eat before the procedure and one where I was late picking her up from school and we missed her surgery. I was wide awake at 4:30am. My fitness tracker said I had 1 hour of deep sleep and 4.5 hours of light sleep. Not surprising.

We became slightly nervous when we heard that Ainsley was coughing. Then even more so when the nurse took her temperature 3 times. She was borderline at 100.2. She was in fleece pajamas, a fleece coat and the hospital was warm. So we stripped her down a bit to let her temperature acclimate. While we waited a few members from anesthesia came to listen to her chest and confirmed there was no congestion, which would be the worry for anesthesia. I sat in the chair deep breathing and trying not to cry. Once her temperature came down both Oncology and Anesthesia cleared us to move on.

We gave Ainsley some presents and then the nurse gave her some giggle juice so that she would remain calm. It makes you sort of loopy and she was hysterical playing with her little Star Wars Itty Bittys. Dr. Olson also said she was entertaining everyone in the OR with her "Yooooooda, Yoda Yoda Yoda."

Dan and I had some breakfast while we waited and made the difficult (well, easy to make, just sad) decision that Ainsley would not be able to join us back in our room to wait. With Selene and many other children with no immune systems we couldn't chance her being contagious. So we waited while she woke up, woozy but sweet, she enjoyed her popsicle and jucie and then we got her ready to go home.

Oh! We also opened a package sent by her teacher. I almost cried when I saw it. She made the most beautiful book of "Ainsley's ABCs" with pictures of her and her class from the past two years. It was the most incredible gift. I wish Miss Mitchell could be her teacher forever. Dan keeps saying if his schools had Pre-K he would totally try to steal her from Mater Dei.

When I got back to Selene she was looking pretty sleepy too, so we ended up putting her down for a nap right around 1 and she fell sound asleep within minutes. Just in time to completely miss the arrival of her cells, the Chaplain who came to bless them, and the social worker who came bearing gifts. I was disappointed that Ainsley wasn't able to be there for it, but FaceTime does wonders in that type of situation.

I was allowed to hold the cells while they were blessed. It was incredible, that little 150 ml bag of cells that could potentially cure Selene and allow her body to do what it was designed to do.

They started the transfusion and Selene peacefully slept. At that point I went to visit Ainsley. She was pretty tired and lethargic and she was still feeling pretty warm. I think most of that was the illness she had somehow caught over the weekend. So we snuggled up and took a nap, she wanted to lay close to me so she could rub my belly and rest with the baby. My heart melted.

Since she was still sleepy, Nana and Grandad took shifts sitting with her while we had dinner downstairs and then I said my goodbyes. She was in the throes of Princess Candyland (her present from the hospital for donating) with Grandad and was content to see me off.

I got back to find a squeaky clean Selene and together we opened some mail and presents she had received from all of our lovely friends and family.

She was pretty anti-bedtime after that super nap, so we all crashed around 9:30. She woke up hysterically crying a few times and apparently she wanted me to put her blanket on a certain way, which I could not for the life of me figure out what the "right" way was.

She woke at 7, entirely too early but happy as a clam.

She's bit a bit off today. Complaining of her legs hurting, her foot hurting, taking forever to warm up to the Occupational Therapist (who gave me the chance to go eat and get my name on the laundry board!) and fussy every now and then. I guess we must be hitting the point of feeling lousy but she's still handling it well.

Right now, we are quite concerned over the fact that they can't get blood from one of her lines. Things are infusing in, but they can't get blood. Which will cause problems if they can't fix it. They ran two doses of what I call "Tubie Draino" yesterday but it didn't work so they are running it for a longer period of time today. I'm praying that we don't have to put her through another procedure to fix it.

Dan is at work all this week and spending some nights with Ainsley. So it's going to be a long one for all of us.