Sunday, April 27, 2014

Casey Turns 8

Casey has had a fun week celebrating her 8th birthday.  On Wednesday she had to start her day with a trip to see a new specialist.  It was not the best way to start her birthday.  She let her nurse and I know that she had other plans.  After leaving there we had to get xrays which made her even more angry.  Luckily after xrays her day started going her way.  We went to the hospital where she has water therapy.  Since we were early we went and had lunch in the cafeteria.  Even though Casey can not eat, she loves to go out to lunch.  She says hi to everyone she sees and just likes sitting at the table watching people around her.  After lunch she got to go to the pool for water therapy.  She was much happier once she got into the water.  On our way out of therapy she passed her boyfriend in the hall.  That was a treat and boy was she excited.  She started talking as soon as she saw him.  She didn't need words at all, you could just tell she was telling him how it was her birthday and she was 8 years old now.  It was very cute.  On the way to the car she told ever therapists, scheduler, admin, etc that we passed that it was her birthday.  She knows them all very well so they knew exactly what she was telling them.  She loved having everyone tell her happy birthday as we left the building.

We made our way home, got her into a bath, then waited for music therapy.  Swimming and music on the same day was exactly what she had in mind for her birthday.  She got to sing all of her favorite songs and play all of her favorite instruments. 

The rest of the week she was having a few rough days.  Luckily she perked back up by the weekend and was excited about her party today.  We invited all of her friends from her dance class and a couple of the neighborhood kids that she have become her new friends.  She was so excited all day that she could hardly wait.  When it was time to get dressed and into her chair she was beaming.  She could not wait to see her friends and the pony that was on its way (the same pony she loved so much from my grandpa's place a little while back).  Her and her friends painted some 'My Little Pony' magnets that Tim made, then we all went to the garage to see the real life little pony.  The pony dressed up for the party and everything.  She came in wearing a tutu and had her toe nails wrapped in purple.  She even had a braid in her tail and glitter in her mane.  All the kids loved her.  It got a little hot in the garage and Casey had a dirty diaper so she had to bow out for a little bit.  She had dressed up in a really cute romper with cowgirl boots (slippers that one of her nurses got for her).  When we went in to change her diaper she decided to just wear a tshirt the rest of the party.  I guess it's her birthday, if she doesn't want to wear pants she doesn't have to.  After saying bye to the pony we all made our way back in for singing and cake.  I think everyone had a really nice time.  Casey is wiped out and went right to sleep. 

The pool is coming along.  We had hoped to have it ready by her birthday, but we think it will be ready this week.  We put water in it last night and today.  We will test out all of the equipment tomorrow and get the chemicals balanced.  I can not get Casey into the pool.  She is going to love it.

Here are a few pictures from the party.  Enjoy...






 

 
 


Tuesday, April 08, 2014

Fun Stuff

Casey had a fun and busy Saturday.  She started with an Easter egg hunt at the local accessible playground.  She missed it last year since she was in the hospital for her surgery.  She went the year before and had a great time.  It was pretty chilly and windy Saturday, but she wanted to go.  We wrapped her up and she got to see lots of her little friends.  She did great for about an hour.  Then it was obvious the wind was getting to her.  We keep her sunglasses on since she can't blink, and we had her ears wrapped in her scarf.  Even with precautions it was just a little too much for her.  Luckily she had already said hi to her friends, taken a picture with the Easter bunny and found her eggs.  As soon as we got her in the car she calmed down.

Waiting for her turn to find some eggs

Casey & Mom at the egg hunt

Casey with the Easter Bunny

We went home and she and daddy both crashed for a little while.  I woke them up to head back out to see Casey's great grandpa.  The assisted living facility where he lives was having a kite festival.  She loves to go see her great grandpa.  All of the staff there are always so excited to see her and she just eats it up.  There was a ventriloquist doing his act when we got there as well as a bunch of dogs from the local humane society all barking and going crazy.  The noise from the dogs was a bit much so Casey and Daddy went to sit on the bench and watch the kites while I stayed with Great Grandpa (GP) and watched the show.  After a little while GP and I went and joined Casey and Tim on the outskirts and watched the kids and staff flying their kites.  It was such a pretty day and by this time the wind was gone so Casey was able to sit and just enjoy the outdoors.  It didn't help the kites much, but it did make it much more enjoyable for Casey. 


GP watching the show

Casey, GP and Daddy watching the kites

We just got back from dance and Casey is getting really excited for the upcoming recital.  They practice their routine a few times each class and she loves it.  I can not wait.  She did such a great job last year.

We have some good news/bad news updates on the latest nursing issues.  One of our existing night nurses wants to get some extra hours/shifts over the next couple of weeks and she has offered to pick up this Thursday as well as Thursday, Friday and Saturday next week.  The bad news is that she is wanting extra hours because she has to have surgery after that and will be out for a few weeks.  Hopefully our agency will find us a good candidate before she has to leave and we can have the new nurse cover some of her shifts while she will be out too.  I am hopeful that things will fall into place.  Having next weekend covered makes me feel a lot better.

Monday, April 07, 2014

Nursing- Again :(

I can not tell you how often I fantasize about being able to put Casey to bed and then just going to bed myself.  Or being able to throw her into the car and head out to run errands with her in tow.  It seems like such simple things that so many people take for granted.  Don't get me wrong; I am not complaining.  I just get really frustrated having to depend on others ALL the time.  I have always been very independent.  It takes 2 people to get Casey to and from anywhere.  One person has to sit with her in the back and manage her airway while the other drives.  I usually drive and the nurse takes care of Casey.  Between doctor appointments, therapies, etc. she has a pretty busy schedule.  When nurses call out sick I have a few options.  If there is time, I try to get in touch with my sister and have her come drive so I can manage Casey in the back.  If there is not time, then I will typically cancel the appointment.  Every now and then if it is an appointment that I really can't cancel Tim may take us, then work in the car while I go in with Casey.  We try to have a nurse scheduled during the day Monday-Friday to help with all of Casey's stuff.  While they are here I am able to get the house clean, run my own errands, etc as well.  They are human though and they get sick, take vacation, have emergencies, etc.

Next we have our sleeping schedule.  We have a nurse come in at night for 8-10 hours every night.  Once the nurse is here then Tim and I can go to bed.  However, if the nurse calls out I have to stay up with Casey all night.  She is not a kid that I can lay down and sleep while on the night shift.  Between positioning her, medications, suctioning, diapers, etc I have to be up and alert all night.  When this happens on a weeknight it's not too bad.  I drag Tim out of bed around 6 then the day nurse comes in to relieve him so he can get to work between 6:30-8.  I am able to get a little sleep.  Anything Casey has scheduled out of the house however I will usually cancel or reschedule.  When the nurse calls out on a weekend it is really hard.  I am up all night, then Tim has to watch Casey all day so I can get some sleep.  Everything that he put off all week while he was working doesn't get done. 

Early to mid- February one of our night nurses that worked Wednesday-Sunday told us that as of March she was not going to be able to work Saturdays anymore.  No problem, she gave us plenty of time to find and train a new nurse.  However, the agency dropped the ball.  There was a lot of reorganization in the office and it just didn't get done.  So pretty much all of March I was covering Saturday nights (leaving Tim on days).  The very last Weekend in March they finally sent out a nurse that seemed pretty good.  I stayed up all that night training her.  She told us and the agency in order for her to take Casey as her patient she needed more hours.  She insisted on at least 3 nights.  One of the first things she told me when she came in was how she likes to get a patient and stay for a long time.  We had the nurse that took off Saturdays give up Thursday and Friday night as well to accommodate the new nurse.  She was not happy about it, but understood we had to do what we had to do to get the shifts covered.  The agency then put her with another patient on Monday and Tuesday nights as of last week.  This past weekend I stayed up all night Thursday and Friday to continue training the new nurse.  On Saturday she was doing really well so I went to bed and just got up every couple of hours to check on things.  I felt like she was going to work out and that training had gone really well.

Out of no where today I get an email from the agency saying that she took another job and effective immediately will no longer be working with Casey.  I am furious.  We completely changed our schedule around to accommodate her.  I wasted 4 nights training her that I now have to do all over again- whenever they find the next nurse.  Not to mention the rest of March that I covered Saturdays.  I am actually worse off now.  Instead of just having a hole on Saturday nights now I have Thursday, Friday and Saturday nights without a nurse.  The previous nurse took another patient.  I am livid.  We'll see how long it takes to get a new nurse out this time. 

On a good note, we did get Emily back.  She took a job with the hospital a while back and had to leave.  Her schedule finally worked out where she is able to come back and work Mondays (most, not all) with us again.  Our other Monday nurse is really sweet and will still work with us some, but Emily's hours work a little better with our schedule/needs.  Casey was very excited to see her today. 

Hopefully we will get a new night nurse in and trained quickly.  Until then, if anyone sees me or Tim on the weekend and we look a little rough, try to cut us some slack :)  I will post tomorrow with pictures from Casey's fun weekend.  Just felt like venting for now.