Thursday, August 28, 2008

Radioactive Baba GRRRL!!!

Lately this has been the "Elodie Chronicles," her present situation has taken over the blog in a big way. She tends to do that where ever she goes really. Today in the radiation department was a great example of that. She has been there five times in the last two weeks. FIVE! Everyone knows her. They brag about her sweet disposition whenever they hand her over to another nurse or technician. She is the good IV girl. She hardly makes a peep and is more offended then physically hurt when they come at her with needles. She is also cute when they sedate her. During these scans she has to be completely still, so sedation is always on the menu. Today she was singing, literally singing, "Lalala" when they gave her the sleepy drugs. She then saw me smiling down at her, she pointed at me and said, "Hey!" As if to say, "Why are there so many of you mommy?" So funny.

So today she had an MIGB. She was radioactive. Hope it gives her super powers, but meh, it probably won't. Yesterday we met with Dr. Michael Rollins. He is going to be doing the biopsy on Wednesday the third. He was so very nice. He actually apologized for having to cancel the first appointment we had with him last week. I don't think I have had a doctor apologize for anything. It was shocking and I thanked him. Joaquin was with us, and he was good. He didn't mind being shuffled from office to office. He was so concerned about his sister while she was getting her exam, he even shushed me! It was funny and he got a sucker for being an awesome big brother. We looked at the CT films and he was very interested. Afterward he was telling us about it in the elevator in his own language of course.

Elodie will have to stay in the hospital over night when she has the biopsy. They are going to do it with scopes so she will only have a few tiny incisions. She will also have a chest tube to drain out any fluid from the surgery. She will most likely have another surgery to remove the thingy when the test results come back from the biopsy. Once we know exactly what stage of tumor it is the doctors will know how to treat it effectively be that surgery, medication, or a combination of both.

Her blood tests all came back great. Her white blood cell where normal as were her electrolytes, which if they were elevated may suggest a more aggressive tumor, but they weren't so Yea! I had to get a urine sample from her and drop it off today. This was hilarious. They gave me these little bags with a sort of bandaid at the top to stick to her lady bits, then the bag had cotton balls in it to absorb the pee. I had to squeeze the pee out of the cotton and pour it into the specimen cup. Gagg. Baby pee is so stinky. You really know you love someone when you willing squeeze their pee from a stinky bag into a cup and then put that cup in your fridge. It is true love and it is real.

Elodie is doing fine through all of this. She has no idea what is going on, she just knows she is getting a lot of attention. I don't think she minds that. Joaquin is mostly stealing the family spotlight. We and the doctors are positive about her diagnosis. She is so strong and happy. There is no need for "poor baby" stuff directed toward her. "Poor mommy," sha! She is happy and usual and up for anything. She pleasantly goes about her day, every once in awhile offering herself up for experiments and test. She presents her arm reluctantly, but proudly for her IVs. She pees in bags with dignity. She is unapologetic in her loopiness and no matter how pissed she is during the tests she always greets her nurses with a "hello." She is a shining example of a good patient. We are very proud of her and love her for her resilience. She is a tough cookie, so watch out world, here comes Elodie!

Tuesday, August 19, 2008

Waiting is the Hardest Part...

Camden dropped Elodie and I out front of Primary Children's Hospital at about a quarter to 8 this morning. The weather was lovely and the babies were in good moods. Camden took Joaquin over the Kelli and Ryan's to be watched for the day. He got to play with their son Steele all day, so he was set.

Elodie and I went in filled out the paper work and waited. She had to drink contrast for the CT scan today. The nurse asked what flavor she would like, (lucky kids get to pick a flavor, the stuff they give adults is plain and chalky and awful.) I said, "Anything but orange would be fine." A few minutes later, she came in with a sippy that was full of orange flavored contrast. She didn't know, but that was the only flavor they had. Great. She had to drink about 9-oz. in an hour. Yuck. We went outside to help it go down easier. I basically had to force feed it to her, but she didn't cry much. She just gurgled it in protest, but still swallowed. Then after she drank that, more waiting. It has to work its way through her system to help the view of the CT.

Camden came up by this time. He said once he drop Joaquin off, he was in instant play mode. Phew. Elodie got another IV after a lot of waiting....yawn.

We then went into the big CT scan room. If you have never seen this machine it is huge. It is a movable bed that slides back and forth through a giant circle that looks like a front loading washing machine. It is weird to put a tiny little person on that monster thing. I held Elodie in my lap as our nurse gave her versaid, a medication to chill her out while she was getting her scan. It was so funny she was doing her usual chatting and then, bam SILLINESS! She just started to giggle. She was looking into my eyes just laughing, then Camden started to pet her hair and she loved it almost purring with laughter. I laid her down on the machine and she cooed and giggled the whole time. Hilarious.

Then we were to go upstairs to the Hematology/Oncology department to get her results. We checked in and waited some more, bickered a lot. Camden isn't very good hospital company, he just sits there looking tired and I want to talk to distract my thoughts. He never wants to talk, really. He never has anything to say. It was irritating for both of us.

The resident told us that the doctor was in a meeting so we should get some food and then come back. Elodie finally got to eat! I automatically go into a hospital cafeteria and get a grilled cheese samich! The craving is from all those days spent on my feet on the floor taking care of patients, ah takes me back. Elodie was in a better mood instantly and so was I. I was so hungry.

Finally the doctor came in and told us what he thinks Elodie has. He thinks she has a neuroblastoma. Now what kind exactly will be determined by a biopsy and bone marrow screen that she is getting tomorrow and another scan she will get probably next week. But the doctor thinks that she doesn't have the aggressive kind, with cells that are rapidly growing and infiltrating other tissues. He believes she has a lower stage kind. I think so too. She hasn't shown any other signs except her lack of strength in her legs. She is so healthy and her prognosis is pretty good. Yeah!

It was an easier day today for Elodie. She got stoned and got cuddled by her mom and dad all day. We had it rough waiting and waiting in those little rooms. That part was exhausting. She is going to be sore after tomorrow, but she will be okay. We have a good team behind us that will make sure she gets everything she needs. She is one tough cookie and so I am, so we aren't scared. We head into storms with our heads on straight and our hoodies on. We should get the results of the biopsy on Friday. Got fingers, cross 'em people!

Sunday, August 17, 2008

Baby's First MRI...

I came home from the Cavedoll show on Friday night (Saturday morning really) and got my Elodie up for a snack. She couldn't eat anything past 3AM until after the MRI was done. She was NPO because they have to sedate babies. It was scheduled for 11AM, which is such a long time for a little one not to eat. I had to feed her something right before the cut off time. She was very confused, but in a silly mood. I knew she would either be really pissed at me, or really funny. I am glad she was funny. She had some peach yogurt, milk and crackers and cheese. She thought I looked pretty crazy in all my hair and make up from the show. Elodie went back to sleep with out a fuss as usual she is a pretty good little sleeper.

We all woke at the usual time. I tried to feed Joaquin at the dinner table so Elodie couldn't see him eating his breakfast and her wonder, "Hey Ma, where the hell is my waffle?" But he wanted to sit at his little table for breakfast so he could watch his cartoons. Elodie played happily on the floor, she was oblivious until Camden came home with bagels for us. I had to put her in her room, that was sad. It is so hard to deny your kid food. So hard. She got her binky which she only normally uses at night and she was pretty okay.

Now on to the waiting. We sat in the little room, as ya do and waited. Filled out forms and waited. Changed the baby and waited. There was a girl about Monro's age coming out of the sedation and she just lost her mind. She was screaming like they were cutting off a limb. That started to get to Elodie. We shut the door and hid in the little room. Elodie was so funny while we were just hanging out. I think she was delirious from hunger. She was laughing at everything I was doing and every toy was hilarious. She was a nut. A nurse came in to tell us that another patient that was already in the hospital had to have an MRI and that is why it was taking so long. This nurse had gum and Elodie noticed. After that she kept signing "eat" over and over. Sad.

Finally the nurses came in to give Elodie her IV. She was so good and hardly made a peep that she got to choose a toy out of the treasure box. She picked a soft brown teddy, I named her Meri, because it sounds like MRI. Heehee. Not too long after that it was her turn. She rested in my arms when they gave her the medicine to knock her out. It was funny how much she tried to fight it. She was laying across my arm and then when she could feel the tiredness coming on, she was trying so hard to get up. She was pointing off into the distance, said "Ma." and then she was asleep.

The test took about an hour to finish and then she would be coming out of the anesthesia for another hour, so I went out and got some gas and a snack. I went to that Tesoro by Presidents' Circle and as I was going into the store I heard our song, "Full of Awe" coming out of a car that had just finished fueling. It was so weird. I texted Camden immediately. (He was home with Joaquin and Monro) Wow, people actually listen to the CDs they buy. Huh.

So back I went to the hospital to wait. I sat in my car to eat my snack and drink my tea. I felt so alone. So all alone. I felt that no one could possible understand what I was going through at that exact moment, except my Camden. I called him and lost my composure. I had been so good up till then. I know what this part of an illness or a disorder or a whatever is like, this crazy "let's figure this out" phase and it sucks. I went through it for almost two years when we were trying to figure out what was happening to my brain. It is different when it is your baby though. They looks so tiny, so small on those big doctor machines. I fidgeted with Elodie's binky while I talked to Camden and had him set me right. He did, he almost always does. I popped the lid of my tea and it gave me a wonderful much needed quote about courage and I was able to suck it up and go in there and get my baby.

The nurse gave me my sleepy girl and it reminded me so much of the first time we met. She was hooked up to an IV, groggy and cute just like she was when I saw her the night she was born. She was trying so hard to talk and tell me all of her crazy drug dreams, but she couldn't. She could just make weird sounds, laugh a little and stretch and shrink her mouth. It was funny. After a half an hour and some apple juice she was good to come back home. She had another nap and then was pretty much back to normal. We went to Ryan's (our drummer) for a BBQ and she was just fine until bedtime came, which is usual. A girl needs her beauty sleep NOW DAMN IT!

I got a call today from the doctor. The findings were not as great as we had hoped, but not completely horrible either. Her brain is perfect, it is developing very well. So we can rule out any cognitive disorders, (I already knew that her brain was fine she is so stinking smart and adaptable). But next to her spine in her thoracic region is a soft tissue mass. It is connected to other tissues around the spine including her muscles and lung. We don't know what it is really, but it has gotten in the way of her spine developing properly and she has some atrophy in her spinal column. That is why her legs are not working and developing like they should. Atrophy if you don't know is the partial or complete wasting away of a part of the body. Which means that her leg and lower spinal weakness could be reversible with lots of therapy or maybe not. We don't know anything along those lines yet.

So what is next? Well, very soon she is going to have a CT scan to get a better idea of what this thing is and what we can do about it. This is all going to move very fast. She may have surgery, she may have more tests, but soon we will know what we are up against and what we can do to help Elodie. I am trying hard to stay positive and keep my nurse's cap on tight. If I think like I nurse more than a mom, I will do better with all that she will have to go through in the next little while. I will be there in the rocking chair waiting for her to be placed in my arms just like the first time we met. I will rock steady in that chair, I will be strong, because I have my Camden to set me right. He almost always does. ; ) Wish my baby luck.

Tuesday, August 5, 2008

Open? Us? I think I'm gonna FAINT!

We opened for The Faint last Wednesday and here is how it went down...

Before we left for Tulsa, Camden got an email from the concert promoter asking if we could be the opener for this particular show. Camden having his wits about him, immediately replied with a "yes." We still have no idea how they found us and why they chose us to do this show. This was a rare opportunity and frankly the icing on the Tulsa cake. Tulsa was so great, I would have been happy if we were to never play again, it would have been the biggest high note to go out on, but we had to make the week completely memorable by kicking ass with a welcome home show in the SLC. So that is exactly what we did and the crowd did not disappoint.

I arrived at around 8:00pm, I had to wait for our ultra hip and super nice sitter Jane Anne before I could hit 'da club. In the Venue is completely different from the last time I was there, which was years ago. New lights, new big stage, new grope-y security crew of which I was not fond. They also had these huge metal barriers that looked like something a rancher would use to inclose cattle. These were used to inclose our lovely audience and keep them away from the stage. Pleasant. The security and stage crew, assemble and shifted, took apart and wheeled around the different pieces of the barriers for a good 30 minutes. We grabbed our gear and took it outside. Ally's keyboard almost tipped completely over in this whole ballet of the barriers. Like I said, pleasant. The Faint were sound checking at this time. They sounded great and filled the crazy open space with such funky good times, we forgot about the crew.

After a quick visit to the upstairs bar where we met Yoseph, a six foot whatever fan and hunk o' sweetness that bought us shots, it was our turn to sound check. We had to set up our stuff in front of The Faint's gear, so the huge stage was tailored down quite a bit. It was relatively the same size as the stage in Tulsa, tiny. So much for a big stage. The sound people couldn't get my mic to work, some sort of cross feed problem, I don't know? So we were still checking when they let all the shining lovable SLC kids into the show. We were up there it seemed like forever, but I was striking up conversations with the cool kids down front. One guy asked me, "Do you feel uncomfortable with all of us staring at you while you sound check?" I replied, "No, do you feel uncomfortable with everyone staring at you 'cause you are talking to me?" He went a little red, then we geeked out about music for a bit, it was rad. Finally the mic worked and we got on with the check, we checked with "Full of Awe," and the crowd even cheered for that. Nice bunch a flowers they were.

I sprayed my throat with my Thayers and then on with the show. The sound was so great, we just flooded the place with our music. It was an awesome set, a bunch of the hits. It was pretty short though only 30 minutes. Meh. It was good to just give the people a taste of sugar and then move on, hopefully we made some fans so they will come see us when we play longer. I faked an orgasm during "Mexico" and mimed a BJ on "On and On," yep good thinking with those antics Kness for the all ages show. Gah. Sometimes people wonder if it is hard to play the same songs for people all the time, and yes, sometimes it is. That is when things like the fore mentioned happen. What can I say, I was still out of it from the drive. ??? I guess people found it pleasing. They clapped along to "Full of Awe," and totally lost their minds during "Taste like a Hurricane." We got a fabulous response. Which is something you hope for when you are opening for a major player like The Faint. Janet scared me to death, because I look over and she was playing in the middle of a puddle. She had knocked her bottle of water over. I was so worried she was going to get shocked. It was all okay, nothing shocking,and she played beautifully even in a puddle of water. I went upstairs after the show to meet people and to see Yoseph again, he bought me another shot, sweet guy. I shouted out to him on the mic during our set and dedicated "Mexico" to him for his generosity. Went back downstairs before I left where I was promptly groped my the security guard. He had no idea that I was just on stage a few minutes before and searched my tiny purse. It can barely hold lipstick it is so small, derp. I had to leave early to relieve the sitter, so I missed The Faint. Heard it was good though. I got a stupid parking ticket for parking like everyone else. Argh. All of the snags aside it was a fun show and an amazing audience. They were really dancing hard, hope they saved something for The Faint. Hehehe.

The thing that was really surprising about this show was the response I particularly got from girls. All the girls I met (and have met lately) were so nice and complementary. When I was in school, I was every play and musical that was put on in my little town, some girls HATED me! And they were mean about it too, spreading rumors, kicking my chair in choir, saying my voice sucked what have you. They hated me because I could sing, dance, say lines, stand in front of a camera and smile and I wasn't afraid to do any of those things, even when I knew they were going to be mean. I have always been able to get up on stage and do something. But for some reason when I was a kid, this bothered some mean girls. I was never a "show off" about singing. I was the same then as I am now when I perform, it is just something I do and I'm grateful people like it when I do it. Now people are nice about me performing for them, want me to do it and that is the biggest gift I have ever received. People now appreciate me for this part of myself that was forsaken for so long. I want people to know that this performing thing is not who I am it is just something I do, it is my job. The cool thing about this job it the instant gratification that comes with it and meeting new people. I love meeting new people and geeking out about music.

Come geek out with me this Friday at Kilby Court doors open at seven, I think. It is an earlier show and all ages this time too, and I will try hard to behave myself. I will be there shortly after seven, gotta wait for the sitter.