My day started last night when I couldn't sleep. I set the alarm so I could get up and work out at 5am. After tossing and turning all night I didn't make my 5am workout. By 6 I was rushed in the shower because I needed to be out the door at 6:20 to be at the hospital by 7am. After a speedy shower I got Kylin up to change her diaper and throw her coat on and race off to Milwaukee. She didn't really need clothes on because once we got to the hospital she would need to change into a gown. I also thought she would fall back asleep in the truck. She did not fall asleep in the truck but she also didn't ask for anything to eat or drink. I was worried that she would be wanting a drink. Traffic on the way up to the hospital wasn't as bad as I thought it would be which is good since we left about 10 minutes later than I had planned. We did slow down to gawk at a car that had just rolled over. I hate gaper's block! We hit some more traffic on 894 which led to a call to Josh. "Do you think it's going to matter if I'm 10 minutes late?" He told me I'd be fine. I didn't know how strict they were on appointment times (I'll comment on that in a bit).
We pulled into the parking garage, it's easy to find a spot at 7am, and I raced into the hospital with Kylin. I didn't bring a stroller so we grabbed a wheelchair which Kylin is quite fond of. It seemed to take us forever to get down to radiology but we made it there about 7:15. I gave the receptionist my new insurance card and she asked if I called to have this prequalified... ummm no. I didn't have to do that with any of her other scans so it didn't even cross my mind. I hate insurance! Glad I have it but HATE it!!! I was going to be pissed if I had to reschedule because of insurance. While I was checking in Kylin made herself right at home.
Kylin wanted me to read her a book so I did and I must have been into the book because the receptionist sneaked up behind me and scared me. She told me everything was fine with the insurance. Kylin's appointment was for 8. We were were told we needed to be there by 7 so she could drink the contrast before her appointment. It was about 8 by the time we went back into the prep room for her to drink the contrast for her CT. This was good timing because she was asking for a drink. They mixed the contrast with apple juice.
I thought Ky was going to suck it down but she decided to sip. She was supposed to drink 16 ounces (or maybe it was 12)but we only got down about 10. Once the nurse brought in the juice for Ky we were told it would be about 1 to 1.5 hours before the scans (that's why we were there at 7!!!). I'm starting to learn that radiology pretty much goes on their own time schedule (and that's probably why we had to wait and wait and wait to get Ky's MRI when she was in the hospital). While we were waiting for Ky to finish the contrast we played blocks and watched "Peter Pan." I think this was the first time that Kylin has seen "Peter Pan" but was interested because she loves Tinkerbell. I didn't think (or I was hoping)we wouldn't make it very far into the movie. We ended up watching the whole thing. Ugh. During the movie the PA came in to get a background on Ky. She's had sedation before without problems and has no heart or breathing problems so we were go for this sedation. Kylin is growing tired of doctors. Before her last hospital stay she really didn't mind them. Now she does everything she can to avoid, ignore, them. The PA was wanting to listen to her heart and lungs and Kylin made a stink about that. Kylin was not having any of that today. She did end up letting PA listen (she was wearing dino pjs and the PA had to listen to the dino's heart first. I roared a little bit and that seemed to help). She threw a fit when she had to put her gown on. She threw even a bigger fit when they taped heat packs to her arms to get her veins big for her IV. The nurse got Tinkerbell stickers and put them on the heat packs and that helped a ton! They are so good there! I would have never thought how much a sticker could help!
That was until they came in to do the IV. I was holding her and when I laid her down on the bed she started screaming. I usually leave the room for this but I couldn't leave her screaming all by herself. I was up by her head. Giving kisses. Telling her it was ok. The nurse took a long time to find a vein but that made for only one poke so I guess it was worth it. Once the IV was in it wasn't long till it was time for scans.
We headed back to the CT room and I don't know if Kylin remembered it from last time but she started crying as soon as we placed her on the table. Oh ya. Sedation was needed! They took one set of scans without contrast and then one with. The brevital that they gave her to sedate her must have burned on the way in because as soon as they started pushing it in her IV she screamed as loud as I've ever heard her scream. It was so scary though cause she conked out mid scream. I thought it would be more gradual than that. They did one set of scans and then put in the IV contrast (oral contrast was for the bowls and IV for the veins) and had to give her another dose of brevital. After the IV contrast there was one scan left and she needed yet another dose of brevital for that. She stayed out while we waited for the radiologist to check the scans and woke up when I picked her up off the table.
We got back to our prep room and the nurse took vitals and we told Ky that we were going to take out her IV. The nurse got the board off and Kylin wanted to take the IV out herself. I was able to grab her before she pulled it out the wrong way. The nurse took out the IV and we were good to go. I got her dressed and we got her in a wheelchair and headed out. We stopped for a cookie at the cafe (becoming our little tradition) and said good-bye (hopefully for the last time).
Once we got in the truck and I saw it was about 20 outside I asked Ky if she wanted to go to the zoo. Of course she wanted to go to the zoo. She told me she wanted to see the monkeys and cheetahs. She was still kind of out of it from her sedation but the monkey house isn't far from the entrance. I didn't have a stroller but I thought she'd walk a little bit. We laughed at the penguins and then headed in to see the monkeys.
Monkey Pile
There is a new baby gorilla that we were hoping to see but baby wasn't out. The baby orangutan was playing with his momma. It looked as if momma was trying to take a nap with baby but baby was not having that. Never been there! At this point Ky was getting crabby and I wanted to leave. Kylin started crying because she wanted to see the cheetahs.
I don't want to go home.. but I don't want to walk
Feeling sorry for her it was off to Big Cat Country. We decided to see if Zero, the polar bear, was out on our way to cheetahs. Zero was sunning himself and looked up when we whistled at him.
I again asked Ky if it was time to go. No. Time to see the cheetahs. Next time I'm bringing the stroller!!! We walked by the elephants on the way to the cheetahs and there were two trainers working with on. It was pretty cool to watch. They had the elephant put his foot out a hole in the fence to wash it and then they had him lift his trunk on command. I never knew you could train an elephant like that. Finally we were at the cheetahs. They were strolling around, doing rounds so we watch them for a bit. Kylin ended up falling asleep watching the cheetahs. Now it was time to go!
Josh called when we were on our way out and wanted to meet for lunch. We went to TGIF and I got us a booth. Kylin slept through lunch and didn't even want any pop. I tried to get her to drink some because I remember the last time she was sedated they said that caffeine helped. When we were getting ready to leave I showed Josh her discharge papers and noticed something. We didn't think Kylin was going to have to have the CT because when we met with the neurologist in Nov. she said we would schedule them but we probably won't need them if she was better. She's better and we called last week to see if we still needed the CT done. Yes, get them done. I was thinking that they just wanted to compare them from her last ones. I didn't think they were for anything specific. This is where looking at the discharge papers was not a good idea for a mom. On the top of the discharge papers I noticed r/o neuroblastoma / ataxia. What??? I thought this was done already with the MRIs. Did they miss something? Did something come up in her blood work? Now the worrying starts. I'm sure she's fine and they just want to be 100% sure she is fine but now the what ifs are coming. How long do the results take? If they saw something would I know by now? When do I call? These are the ? running through my mind right now. Say an extra prayer for Ky tonight!
