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. 

Monday, March 31, 2014


March flew by, I am not sure how that happened so fast.  Casey is doing okay.  She had a rough time in the middle of March with some respiratory stuff that led to having her on and off oxygen for a couple of weeks.  Nothing serious though, so we were able to avoid the hospital.  We thought for a little while that we were going to have to put her on bipap for a few nights, but as soon as she heard us talking about she helped us clear out her little lungs.  She really HATES bipap.  We are waiting until we make it 1 month without a GI bleed before starting up the shaky vest again.  It may have helped or even prevented the crud in March, but it seems to make the bleeding worse so we are still holding off.  Hopefully we will be able to get there soon.  We have not made it a week yet, so the month goal may still take a few months.

Casey saw a few doctors in March.  Her Cappy (my mom) came and hung out over spring break to help get her to and from appointments while her nurse was on vacation.  Casey is officially 40+ pounds now- WOW!  You can tell too, she looks much fuller and more healthy.  Lifting and moving her are getting harder by the day.  It's good though.  She worked for years to finally get some weight, so I will just figure out how to lift and move the extra pounds.  She saw a new Physical Rehab doctor as well.  We liked the one she was seeing, but they had us move to a new guy that specializes in botox for the salivary glands.  We tried them before (years ago) with no improvement.  This guy uses ultrasound to make sure that the salivary glad is injected and that the botox is not ended up in another area.  We will give it a shot and see how it goes.  I think it's scheduled for June sometime.  He also suggested that we get Casey on with an endocrinologists.  We had been thinking about calling one for a while with her showing some signs of precocious puberty.  Since she turns 8 next month and it's not full puberty yet I am not sure if this is the proper diagnosis or not.  It's pretty common in kids with brain injuries, and doesn't change her care plan much (other than extra baths and potentially hormone injections in the near future).  The doctor that suggested endo wants us to see them for Casey's bone health.  When he did his exam and started moving her arms we jumped out of our seats to make sure he did not force her to bend since she will break.  He said that we should get a bone scan that can tell how how brittle her bones are (or how severe the osteopenia is).  Then the endo offers a quarterly infusion for patients with brittle bones that helps to strengthen them.  Casey has a few friends that get this infusion.  I have heard that the first years worth of infusions are very painful.  If Casey is on the line of needing it or not we will put off the infusion.  If it is something that she needs and they can assure us that she will benefit, then we will have to consider it.  Until we know more from the scan and do more research on the actually risk/benefits of the infusion we are not ready to make any decisions just yet.

The pool progress is moving.  There was some bad weather that caused some delays, and the crew was held up at another job for a little while as well.  I think you kind of expect delays on projects like this though.  They are back today and working on the next phase- there is still a good amount to be done.  It will be at least a few more weeks.  I do like to look outside and see progress- it makes me very happy.  Now, I must get serious about the diet to be swimsuit ready.  Thank goodness for privacy fences and landscaping :)

Casey started back to dance in March as well.  She is so happy at her dance class.  The first day back she talked the entire time.  You could just tell she was trying to tell everyone how happy she was to see them and all she had been up to since they saw each other last.  I can not tell you how full my heart is when I see her at her dance class.  She is excited to be there, her friends are all excited she is there, she is like every other 7 year old girl.  It really is one of my favorite things to see her do.  This year's recital is coming up soon.  We can't wait!

This weekend is the special needs Easter egg hunt at the accessible playground.  She should have fun with that.  Lots of her friends will be there.  After that we have to start getting ready for her birthday.  That's about it for now.  I will get some good pictures at the egg hunt and post those soon.  We hope everyone is doing well.

As of 3/31

Saturday, March 08, 2014

Trip to the Aquarium

After a really long and hard winter Casey finally had a long over due good week.  She was up for playing with her toys, she worked hard for her teacher and therapists, she went to all of her scheduled appointments, and she finished up her week with a visit to the new aquarium.  She met some of her friends there and they all seemed to really enjoy themselves. 

When we first got there we walked around the gift shop a little.  While Casey's nurse and I kept showing her stuffed animals, toys, etc Casey kept finding the jewelry section.  Every time she got excited in the gift shop it was when she saw sparkly bracelets.  My little diva.  After some shopping, Casey saw her friends coming in from the parking lot.  She got pretty excited when she saw them.  I love when she gets to spend time with her little friends.

The aquarium is really close so when they had half price passes we bought a family pass for the year.  We had hoped to go much sooner, but Casey has just not been up for it.  Its a very small aquarium, but just right for Casey.  I think a big place would be too much for her.  They had a good assortment of tanks with different types of fish, birds, snakes and lizards.  They only had 1 turtle out when we were there, hopefully there will be more turtles next time.  The octopus was not out this time either.  Casey liked all of the different fish exhibits, but she didn't seem to care about the reptiles and she is officially NOT a bird fan. 

The let the kids come into the bird cage.  While Casey and her friends waited their turn Casey was very excited and you could tell she wanted to go in.  At first she was fine.  We would hold the birds so she could see them up close.  After a little while one got past her nurse and I and landed on Casey's head.  She kind of freaked out.  We got out of the cage pretty quick and she calmed down.  I don't think she will be revisiting the birds anytime soon. 

They had 2 big tanks.  One tank had sharks and the other had manta rays (as well as other fish in both).  Casey LOVED watching the manta rays. They would come right up and smile and splash around.  We had to drag her away from that tank.  She liked the star fish and jelly fish too, but the manta rays were by far her favorite. 

They welcome kids to touch the fish and feed them (at certain times).  One of Casey's friends was very brave and touched most of them.  Casey and her other friend were both in wheelchairs, so they were not able to get to the fish to touch them.  One of the staff members was nice enough to bring a star fish to them so that they could touch them as well.  That was pretty cool.  The place was easy to get around in the wheelchair, the exhibits just didn't really convey to people that could not bend/climb over.  As long as the staff is willing to help those that can't get there it's all good.  The lady that helped was very nice and more than happy to bring the star fish to Casey and her friend.

As we would take Casey from tank to tank she would yell at us to take her back if she wasn't done looking yet.  Next time we will have to take her food and let her just sit at the manta ray tank all day.  

The pool crew took most of this past week off.  The weather has not been cooperative so they have to wait for a dry patch of days to do the concrete.  Hopefully they will get back on track this week. 

In other updates- Casey had a doctor appointment last week and she has officially hit the 40 pound mark.  We finally got her chair fixed up too.  New handle bars and a storage tray make it SOOOOO much more usable.  Casey's seat is still the same, but to her entourage it's a big deal.  Her nurse and I were so excited to take it out for the first time and Casey thought we had lost our minds. 

It's spring break and SXSW this week.  We will NOT be going anywhere near downtown.  Casey's Cappy (my mom) is going to come in for a few days later this week.  Casey is looking forward to her visit.  Other than that we hope to just keep her well and hope the nasty winter is behind us.  Here are a few pictures from her fun day- enjoy :)

Casey watching the manta rays

More manta rays

Touching the star fish

"In" the tank

Casey's nurse petting the manta ray

Before the bird mad her mad

Watching the sharks

Checking out the jelly fish

Monday, February 24, 2014

Rock, Rock and More Rock

The pool installation officially started on Monday of last week.  This part of Texas is known to have very rocky soils.  They got about a foot, maybe a little more, then hit rock.  For the past week it has been a lot of jack-hammering.  Casey is not a fan of the noise.  Her room is on the opposite side of the house so she has been spending a lot more time in her room than usual.  Luckily she likes her room.  What's not like, fairies, flowers, and pink everywhere.  For Christmas she got some new fairy decorations to add as well.  The picture is her "Dream Fairy" sending her pixie dust for good dreams. 

The pool project is expected to be about 6 weeks, so we are just getting started.  We are all very excited about the final product.  It is going to be so great to get Casey in the water and loosen up those still little joints. 

Her seizures are a lot better, maybe 1-2 times a week now versus the 4-6 times a week we had been dealing with.  Her doctors are working to get the bleeding under control and the seizures go along with that.  She has another respiratory bug now, and sadly I am not surprised.  With the bleeding we have not been able to do her aggressive respiratory treatments so she is more prone to pneumonia.  We are working with her doctors though and hope to have a better approach to keeping her healthy.   Her blood count is finally in a healthy range.  It took some time to get her out of the anemic range, but we were able to stop the iron last week.  

Casey had Botox injections last week to loosen up her armpits and hands.  Her teacher and school PT came today and both noticed improvements, so that is very good to hear.  Her poor little armpits are so raw from her being so stiff and rolled in.  I really hope that Botox and soaking in the pool (as soon as it's ready) will help improve her skin breakdown issues. 

I think that is about it for updates right now.  Tim set up a camera to capture photos of the pool each day.  When it's done he is going to make a cool time lapse to show the entire transition.   We are putting in a really small pool; I can only imagine the time and noise that would go with a big pool.  We hope everyone is doing well and enjoying the nice spring weather (if you have nice weather that is).

Friday, February 14, 2014

Hostage Situation

We have said it many times before, but for anyone new to the page, suction is something we rely on HEAVILY!!!  That being said, we have backups and backup backups, etc.  We have some that run on batteries to use when we are out of the house, or moving around the house, and then stationary units that run a little (very little) quieter to use while Casey sleeps.

Our preferred suction machine is called a Clario.  The company that sells these no longer sells them in the US.  A few years ago we had 1 that we loved and we decided to buy 2 more from Canada.  These are our main machines.  When one's battery dies we go to the next and plug in the now dead to charge.  This made it so there was 1 in use, 1 charging, and 1 ready to go (most of the time).  When Casey's little friend Guili passed away in July they had a new model of a machine offered here in the US that they gave us to try out.  We really hoped it would be as good or better than the Clario so we could move over to it.  It worked, better than the previous model by the same company, but it's suction was not as consistent as our Clario so it was our backup that we often kept in the car and had handy away from the house.  We also had an old model from that company that we had for emergencies, but really never use.  It is so LOUD and Casey gets really angry when we turn it on.  Then we have the stationary unit in her room.

A couple of weeks ago 2 out of the 3 Clario's broke.  Since they are not offered in the US, we had to ship them to Canada for repairs (ouch!).  We still had 1 Clario and  the one from Guili to use as well as our older portable backup so we didn't worry too much.  We were using the remaining Clario and when we went to use the backups neither was holding a charge.  They both still worked plugged in, but as soon as we removed the charger they failed.  This has happened before with this brand.  If you don't use the battery often they just stop charging.  We were a little freaked out having only 1 portable, but the other units were out for repairs and we hoped they would return quickly.  We kept the remaining unit charged as much as possible and carried plugs with us everywhere we went (we always have the plug- just in case).

Last weekend our only remaining portable stopped charging!!!  Oh my goodness, we have been on edge.  If the power went out our only option would be to take Casey to the car to power the unit until we could get to power.  We couldn't go to any appointments because we had no suction from the car to where ever we were headed.  We cancelled everything out of the house this week.

Of course, Casey is sick this week.  She has been trying to get over a cold and just kept getting worse.  I called her doctor to tell her and see if she wanted us to go in for xrays, or to see her when all of a sudden I realized- WE CAN'T LEAVE THE HOUSE!!!  We were hostages unable to leave a plug.

The company sent back the repaired units and we watched tracking more than TV over the past few days.  Yesterday it was out for delivery.  We waited eagerly all day for FedEx to knock on the door.  Just before 7 the status changed to "delivered- left at door".  Tim went outside and said no package, no truck.  He walked up and down to see if FedEx maybe left a box at a neighbors house- nope.  Of all the packages to get lost in shipping, not this one!!!!  I was freaking out and Tim called FedEx right away.  Luckily he was able to figure out what had happened.  The company billed our current address for the repairs, they had our current address as the return address, but for some reason they shipped the package to old house.  Tim threw on his shoes and rushed over.  The package was there and he was able to get it back home as I was getting Casey to bed.

Talk about a stressful week.  You would think with all of the backups we have in place we would be able to avoid this kind of drama.  We planned to take Casey to get an xray this morning and then possibly to see her doctor, but now that we CAN leave the house again, she seems to be feeling much better.  I can breathe again knowing that we CAN leave if we need/want to.  Today has been great having the portable units back in rotation.

Tuesday, February 11, 2014

Weather Bug

This weather has taken its toll on just about everyone.  It finally caught up to Casey last week.  She started with an ear infection and has been having lots of respiratory issues.  No fever, and the stuff she is clearing is out is thick and tons of it, but it's not the color we would see with a pneumonia or infection.  I think she has a nasty cold or flu (she did get her flu shot though- so hopefully it's a cold) and an ear infection.  She has needed a lot of oxygen over the past few days and tons of suctioning.  Last night was a little better than she has done in a while so I was hopeful, but today she is back to being miserable.

The good news is that her GI bleed does seem to be a lot better with the preventative medication as opposed to taking it re actively.  The bleeding being better has led to her seizures improving as well.  That's all very good news.  I hope to talk with her GI doctor this afternoon to get the official results of all of the tests he ordered and come up with a long term game plan.  We saw neuro last week.  She said that Casey's EEG did not show any obvious seizures, but that it does have a lot of noise (abnormal activity- all of her EEGs have had that- nothing new).  She thinks that the increased seizures with the bleeding and when Casey is sick could be either Local Seizures (also called focal or partial) or it could be a pain response and not actually a seizure at all.  Since Casey has little to no control over her body movements, she said that if Casey is not able to express pain in other ways we may be seeing them as what would appear to be a seizure.  Since they seem to be better controlled now we will just keep an eye on things and go from there.

We plan on just laying low the rest of this week while we let Casey get over whatever bug this is, and then we follow up with ENT next week to see how the ear looks.  I'll try to post more next week when we have all of the labs and doctor updates.  Until then we hope everyone is well and staying warm.