Surgery and Beyond

Guest Post-er: Angela writing in Marida's absence!

Marida asked me to blog while she's too drugged to write!  So here's what has happened since last Wednesday (from my perspective):

April 20, Wednesday:  Marida spent quite a bit of time packing up her room at Shriner's.  She had accumulated quite a bit of stuff in her 2 month stay there.  I told her I needed to rent a U-Haul to get it all out of there.  I got there at about 5:00 that evening and started putting things in my car and quickly realized it was never going to all fit.  So we called the Taylors (who were driving to Cape the next day to close on their house) and they came in their van and got most of it!!  

At 7:00 I ran to the airport to pick Jim up...he was arriving from Europe.  We all settled down at Shriner's for about 4 hours sleep before we had to be at Children's Hospital at 5:30 the next morning.

The staff at Shriner's ADORE Marida (that's the part she's not going to tell you!).  They were all so excited about her surgery.  

April 21, Thursday: Surgery Day:
Surgery started at 9:00.  Marida got pretty nervous but drugs are amazing.  They told her to give me a hug in pre-op, put some meds in her central line and she immediately went limp like a wet noodle!  She said, "Wow, that's fast", and she was OUT!
I then spent the next 7 hours in our private waiting room (mostly alone since Jim had to get home to take care of Michael...and my friend Becky came for a while) getting updates every hour about the progress.

At 4:00 Dr Lenke and Dr Little (her FAVORITE doctor on the planet...her doc from Shriner's) came to give me a post-op report.  Dr Lenke actually took pictures during the surgery for Marida.  He had a stack of them in his hands, he stood there and put them in order and handed them to me.  I looked at the first one and nearly passed out!!  She'll love having them but OMG....not me!  He did it for her because he's excited about her going to med school.  

He explained to me that the surgery went well but that he had to do more than normal.  He had to actually cut pieces of 5 of her ribs in order to get to her spine because her ribs had grown around her spine....OUCH!  That makes her MAJOR surgery and recovery harder because it's also like having 5 cracked ribs.  The best thing he said though is that the protrusion on her back is 80% gone....with most correction coming after the second surgery!!  That's when I cried!!  

Dr. Little stayed after  Dr Lenke left and told me that she got to put in 3 of the 27 screws in Marida's spine!  That was Marida's biggest hope: that Dr. Little would put her permanent mark on her!!

Marida went to Intensive Care that night and had a pretty tough night, but nothing like what was to come!!

April 22, Friday (the day that is forever missing in Marida's mind now!)
This day was spent in ICU.  Marida had her first physical therapy session which was very painful.  The PT came in with 2 student PT students.  As one student PT stepped up to sit her up, Marida said, "No, I want him to do it!"  Even in her drugged state, she knew she wanted the PT and not the student!!  

She got moved to a room on the 10th floor late in the around Friday.  

The days that followed are a blur of unbelievable pain, PT, nurses coming at all hours, more pain, asking for better meds, and on and on!

She finally got moved back to Shriners on Monday, April 25.  I've got more to say, but I'll say it later.

For now, let me just say that Marida is one of the most courageous and brave young women I've ever  known!    She's my hero, Indian Princess!!!

One Step Closer!

Today I got my central line in.  They took me down at 7:00 am, I was not happy.  Then I had to lay down there alone for almost 2 hours until they were ready.  They didn't let me take my phone down.  I was so bored!! I saw Dr. Anderson and Dr. Little down there. Dr. A gave me a high five and a handshake and told me good luck but that I didn't need it.  Dr. Little, my resident, came over and talked to me.  She asked if I was nervous and I said a little, she told me not to be.  Seeing her and talking to her made me feel a little better. When they wheeled me in they took a while to knock me out compared to when I got my Halo.  When they put in the anesthesia I tried to stay awake as long as I could this time, didn't last too long.  Next thing I knew I was waking up in the PACU.  I remember hearing the nurse talking and she told me stop rolling, I was going to hit my head.  I told her I had a Halo on, I couldn't hit my head.  She called me a wiggle worm. The first person I saw when I woke up was Dr. Little which was a surprise, a very nice one!!  My IV hurt, bad!!  I told them my IV hurt and asked them to take it out, they did.  I was weird it hurt 10 times worse than my central line.  I'm not sure how long I was down there, it wasn't too long though.  They gave me some water, my mouth was so dry!  Angela's sister, Bennette, came up to be with me.  They took me back up to my room.  One of the first things I asked for was my phone!!  A little addicted.  I got some water and crackers.  When I did well with those I got some ramen.  Then for dinner I had chicken and dumplings and a baked potato from Mcalisters. . . . yummmmm!!!  I never got sick!!!  I am so thankful!!!  I told the anesthesiologist and she gave me some medicine with the anesthesia.   I stayed in bed most of the day, pretty much because I could!!  I haven't done this in months!!
I was very pleasantly surprised today.  I didn't feel as bad as I expected.  And it was nothing like the other two kids made it out to be.  That makes me feel better about my big surgery.  I know I have a higher pain tolerance so hopefully this shouldn't be quite as bad for me!!  I'm so ready to just get this done!  I've said this so many times.  I know it has to happen and I don't want it hanging over my head anymore!!

Surprise!

Yesterday was a good day.  Kimberly came back up to our room from recovery.  She looks great!!  She was still pretty sleepy though so I hung out in RT most of the day.  I did wheel behind Kimberly as she walked for the first time, she is so straight!!  My friend Hannah told me the day before she had surprises for me today.  My surprises were AWESOME!!  She brought up three of my other friends to see me that I hadn't seen since I left Cape.  We all hung out and talked and then I got good food for dinner!!  I found out my central line is at 8:00 am Monday morning, too early!!  Oh well, I don't sleep in much here anyway.

Today went by fast!!  I got Krispie Kremes for breakfast!  What a treat!  I don't think I have ever lived anywhere that had Krispie Kremes close by.  Then I got yummy pizza for lunch.  I am so spoiled, amazing people!!  I spent the afternoon trying to fill out paperwork for UMKC, I was not very successful but I got a little done.  I was so tired this evening I ended up taking a 15 minutes nap in my wheelchair.  I've got to finish paperwork and pack in the next few days, fun stuff!!

So here is the countdown as of now:
Central line: 34 hours
Big surgery #1: 106 hours; 4 days
Big surgery #2 (get my Halo off!!!!): 18 days

ONE WEEK!!

One week from today is my first big surgery!  It was supposed to be today until they moved my dates.  I was not too happy about that all day.  I was actually pretty mad about it.  But this evening God reminded me he knows what he is doing.  My resident came in and told me she had good news for me.  She is going to be in my surgery.  When I mentioned my unhappiness over me not being in recovery at that very moment she told me that if I had had my surgery today she would not have been able to be there.  It all makes sense now.  I see why the dates had to change.  I really want her to be there and knowing she will be makes me feel a little better about the whole thing.  I'm so thankful that God is so patient with me and when I need it he sends me little reminders that he is in control and he knows what he is doing!  I also found out that not only am I having 3 vertebrae removed I'm also having pieces of my ribs removed.  Apparently my spine isn't just curved it's rotated.  My spine is touching my ribs in the back.  To be able to put in the screws that will attach the rods that will make me straight some pieces of ribs will have to go.  So my surgery will be a little more different, and of course more complicated, than everyone else's.  What can I say. . . I'm complicated! 
The last week I have eaten so much food.  It's totally crazy!!  As a result I gained 2 1/2 pounds in one week!!!  Very excited about that!  I downed a pretty good sized milkshake Rachel speed (really fast) on a full stomach.  I can even tell that I'm gaining weight, finally!

Today I had what will have been my last "Great Lengths Club" meal.  It's the dinner for kids who are here long term.  I was the only one tonight.  But it was pretty fun.  I have one more teen meal before it's off to surgery I go!

Earlier this week I had a pulmonary function test.  I went from 30% function to 35% after over 7 weeks of traction.  Not very encouraging to me.

I am now the only one left here that has not had at least one spine surgery.  I hate being last.  In school I always went first to get it done and over with.  That didn't work out so well this time.  I imagine I am supposed to be learning a lesson.  Last night and tonight I have a private room.  My roommate and very close friend here went to surgery yesterday morning.  I got up early with her and hung out before she went down.  Her host mom came up and gave me updates and messages from her after surgery.  She really wants to see me.  It's weird because we have pretty much been inseparable here, we've done everything together for the past month.  It's going to be hard once she leaves the hospital and even harder when she goes back home to Belize.  I HATE saying goodbye.  My other friend from Belize and I talked yesterday.  She is doing great!  I miss her too!

Yesterday and today were not my best days.  I spent most of the day in pain. The pain was completely unrelated to the 6 screws in my skull or the 30 pounds hanging off my neck, killer cramps.  This was made much worse by the fact I can't have ibuprofen since I'm about to have a spinal fusion.  Tylenol is useless.  Yesterday morning in PT I made it 10 minutes then in the afternoon I made it 15, both at 2.5 mph instead of 3, today was 8 minutes and 12 minutes at 2 mph.  But luckily Rachel spent a good part of yesterday with me so that definitely helped distract me and today I had a good friend with me.  I was out of traction a lot too.  I also laid down in bed during the day for the first time in almost 2 months!  It was nice.  I miss it.  I can't wait to be home so I can nap!!  My surgery is soon, really soon.  It seems weird to me.  All this waiting and it's finally almost here.  I'm a bit nervous but still really excited!!  Ready to put this all behind me!

Happy Letter, Happy Day

I had a fun day today!  My one nurse kept commenting on how she loved to see me so happy.  Wonder why I was so happy?! :)  Angela, Rachel, and Ashley all came to visit me today.  I have been greeted as "Dr. Marida" ever since Wednesday, which is pretty fun!  I got my letter today and got to go through all the stuff.  I filled out my acceptance forms and got all that ready to be mailed in!!  It's really happening!!  There is SO much to be done though, it's kind of crazy!  I have to fill out lots of different things, take tests online, figure out where I can take chemistry this summer, and last but not least figure out how in the world I am going to pay for medical school!!  But it's okay, I'm not freaking out, I know it will all be fine and work out.  I am, on the other hand, starting to be a little nervous about my surgery.  I'm not actually nervous about the surgery part because all I have to do is go to sleep (and wake up move my feet then go back to sleep for the wake up test).  I'm nervous about the recovery.  My friend who had her surgery last Thursday is till not doing to well, she is in pretty bad pain.  And everyone tells me it will be harder since I'm older.  But I did talk to a nurse who said my friend is an unusual case, pain medicine is helping her.  She said I shouldn't worry or expect her recovery but still I don't know what to expect and that is hard for me.  I'm just ready to get it done and over with!! It's coming!
I talked to my resident today about my progress.  She said my clinical photos show a good improvement.  She is going to print me a copy.  I know I ask a ridiculous amount of questions, especially compared to my roommate who doesn't want to know anything, but that's just how I am.  Angela got picture happy today.  I was looking at them and thinking I guess I don't look to weird with my Halo.  I still can't wait to get this thing off my head!!  I long for the day when I can blow dry and straighten my hair!!!

AHHHHHHHH!!!!!!!!!!!! :D (urgent news!!)

I GOT INTO UMKC!!!!!!!  Today I was randomly checking my email and I saw a message from UMKC.  I wasn't sure if I should open it or not, of course I did.  It was an invitation to a welcome reception for admitted students!  I freaked out and started screaming!!  I called Angela and she satrted freaking out and soon everyone was freaking out!  Me and my roommate unhooked and started jumping around the room screaming and dancing!  Then we ran out and started dancing around the nurses station screaming!!!  It was great!!  I had some visitors there with me too, which made it even better!!  And now I have Friday to look forward to celebrating again!!!  I am SO happy but a part of me is sad that I will be leaving Cape, I'm sad about leaving the people not the city.

Then today my best friend here at Shriner's left.  She is from Belize and I will most likely not see her again for many, many years.  We got here the same day and it seemed we bonded instantly.  We always talked about everything together.  When she left we were both crying.  When I leave it won't be hard for me because I will be the last one to leave.  But I have to see everyone else leave, not easy.  I would much rather leave first and have it be hard but just once, and I'd be home sooner too!!

The Outside World

Yesterday was an all around great day!  In the morning we got to go on our out trip!  We were out of traction on the bus ride over to the theater.  Then we got back in when we got there.  We saw the movie "Beastly".  It was pretty good!  After the movie we ate at the little cafe there.  The food wasn't all that good but I guess it was better than hospital food.  Then we went to play in the arcade.  We couldn't really play any of the games in traction so they let us free!!  It was so much fun!!  Us three Halo's went wild!  Kimberly and I played on of those dance games.  I made it all three rounds and at the end was a bit out of breath and tired.  If I had tried to do that two months ago I wouldn't have even made it through the first round without getting to short of breath and having to stop!!  It was so cool to see the improvement!!  I loved getting to go out, far from the hospital, and just feel kind of normal for a few hours!!  As we were leaving the hospital these people stopped us in the lobby.  They started talking to me about the interview I did and how well I did.  They said I was a great spokesperson and that they would be sure I got a copy of the interview.  I'm thinking I will have to lock that away.  Then in the afternoon I got a very excited call from Rachel.  She was very pleased to inform me that my letter from UMKC arrived!!!!!!!  I freaked out!  I made her promise not to give in and open it even if I begged.  Within a few minutes I was begging.  Thankfully, Rachel has more self control that I do!!  I am getting the letter delivered by three of my favorite people on Friday!!  The anticipation is torture!!  I just want to know so bad!!  But I know whatever happens will be for the best.

Today was a bit torturous.  I was constantly asked about my letter.  Nurses came in and asked me, people from PT and RT were asking me, and Dr. Lenke's nurse even called me to ask!!!  Definitely not easy to not think about it!!  I'm just ready for Friday!!  Everyone here keeps saying I got in.  I know the envelope is big but I don't want to get my hopes up.  Thinking about the letter is distracting me a bit from thinking about my surgery but not as much as I hoped.  One month from today I have my second surgery!  My first one is 15 days away!!  It's coming!  I'm thinking next week will be hard and long because it's the week before stuff gets rolling and not much is happening and on top of that most of my friends will be leaving.  But the week after that starts off with my central line and then a few days later it's showtime!!  I am so ready!!

Sleeping in

Last night I could not fall asleep.  I ended up getting up and going out to the nurses station.  I stayed out there hanging out with some of the coolest nurses for almost an hour.  They are so much fun!  Finally after one I made myself go to bed.  This morning I had a nice nurse, she let me sleep without waking me AND got us all Dewey's pizza.  That is my new favorite pizza, besides Chicago.  I love food from the outside world!  Then in the evening I got to Skype with everyone at home, a full house.  I so wish I could have been there!  But it was really good to see them all.  Then I got to see myself, on TV.  The cardinals club interviewed all the Halos last month and it aired today.  The piece was 90% me and I didn't do as bad as I thought.  Then tonight, with encouragement from me, I believe the drama is about over!  What a relief!  Next week is going to be a crazy week with everyone coming and going for surgery.  I'm so ready to be the on going!  But it's coming!

Finally April

The last few days haven't been all that exciting.  Wednesday I had a friend come up and see me who I rarely ever get to see so that was nice.  My friend who went for surgery Monday came back up to the floor.  I spent some time just sitting and talking with her.  Other than that nothing exciting happened.  Yesterday was a bit more fun.  I spent more time with my friend who had surgery Monday.  She had a rough morning and has no family here with her because she is from Belize, so I stayed with her.  Then I had a visitor and took a beating in rummy.  We got good food for dinner, Burger King.  I ate a lot; 7 nuggets, fries, and a strawberry milkshake.  Then I played cards in RT.  I have really never played this much cards before in my life!!!!  After that me and my Halo crew went to the table behind the nurses station and stayed up till 1 am.  We had fun planning for April Fools Day!  Our plans worked out pretty well, lets just say we got a few people :)

Other than the pranks my day wasn't too exciting.  I had a great piece of cake with my lunch.  Most of the day we all just hung out.  My friend who had surgery Monday still wasn't doing too great today, but she is getting there.  My friend who had surgery Tuesday is doing amazing!!  It's like she never had surgery, or scoliosis!!  She looks and feels great!!  I'm definitely praying that I will have a recover like hers.  Seeing both of them has made me feel a bit more nervous in some ways and a bit more at peace in other ways.  I'm just so ready to get this done and behind me.  It was exciting today to flip my calendar to April.  I can now see my surgery date, which of course is circled like crazy in multiple colors!!  And now my countdown is in the teens!!  It's coming!!