SANTA!!!

Casey has had a pretty fun weekend so far; definitely a great start to her Christmas break.  Last night we went over to some friends for our monthly game night.  The kids drew names for Christmas presents and it was early enough in the day that we decided to take Casey with us.  Usually she stays home with her nurse, but she was so excited to go to her friends' house for a Christmas party.  She was having a great time just being around her friends.  Then, to make it even better, she got a present full of 'My Little Pony' stuff.  By the time she got home and to bed to she was wiped out. 

This morning Santa came through the neighborhood on the back of a firetruck.  We expected him around 10 this morning.  After Casey's morning medicine and routine we got dressed and then headed to the garage.  She invited a few friends from the neighborhood to come over and wait for Santa with her, and while we were outside a few other neighbors along the street came and joined us as well.  Santa's 10AM arrival ended up closer to 1PM, but we all had a great time waiting.  We made some cocoa (it was a little chilly here today) and the kids all had a great time playing together.  We ended up ordering pizza for lunch too since everyone was getting hungry.  We can not say enough how happy we are to have moved to this neighborhood.  Days like today when we get to spend time with our wonderful neighbors just remind us how much we love it here.  Casey especially, she is just one of the girls here with her friends. 

Here are a few pictures from today.  Casey had so much fun.  I love that the fire department does this for the kids.

Holiday Fun

Last weekend Casey had a really fun day.  She was working on her gingerbread house that she was really excited to do when some friends from the neighborhood stopped by.  She loves to hang out with all her girl friends.  They helped her decorate the house.  Casey had a great time.

Later some other friends came by.  While they were here they all made ornaments with letters to Santa.  The ornaments came out really cute.  After crafting they all sang along with Casey's karaoke machine.  They put on quite the show.

This weekend Casey had a lot of fun too. I was busy with a special project with Mommies of Miracles.  While I was gone she and Daddy had a great time.  They played guitar, snuggled, watched movies and pretty much did everything Casey wanted to do.

This coming weekend she has some fun stuff planned.  Hopefully she has a good week and maybe we can finally get that family Christmas picture.

Latest Updates

Christmas is right around the corner and I feel like Halloween was just yesterday.  I used to be so on the ball with everything, ahead of schedule, I never missed a beat.  Lately I feel like I run and run all day long and never catch up.  Oh well, me and 99% of the country I think feel that way.

Thanksgiving was nice.  Tim's mom and brother came in for a few days.  It had been a while since we saw them last so it was nice to catch up.  The last time they saw Casey was shortly after her last surgery.  At that time she was a puny 28 pounds.  I am pretty sure she has passed or is really close to the 50 pound mark now.  She has grown a LOT since Grandma Barnes last saw her. 

Casey is still having a lot of tummy issues, and we still deal with bad days, or bad mornings, so we just laid low over the holiday.  The pool was still being repaired, but Casey did get to swing some.  Her grandma got us a nice heater for the patio as a house warming gift so that Casey can swing all year now.  We have used it quite a bit.

On Thanksgiving some of my family came in for the day to join us for dinner.  Everything was delicious.  I LOVE Thanksgiving food.  Casey did great on Thanksgiving.  She was having a pretty good day and was able to sit in her wheelchair at the table with the rest of us.  It's not often we can pull that off, so it was really nice to have her at the table.  She even chatted a little off and on.

Tim finished the table just in time to use it for Thanksgiving dinner.  It came out BEAUTIFUL!!!!  He really does have a gift.  I am pretty lucky to have such a talented husband.  He entered the table in a contest for wood working.  Be sure to check it out, and vote for him.  You do have to register for the site to vote, but it's free and easy and they don't spam members. He loaded some great pictures of the table as well. 

You can find his contest entry here:
http://www.instructables.com/id/Trestle-table-with-floating-arched-stretcher/

On Thanksgiving evening I got a text from one of Casey's nurses that we miss dearly.  She and her family moved to Houston (her family is there) and we really hated to see them leave.  They visit Austin from time to time.  They were in town for the holiday and she came over with her kids (you may remember her daughter from previous post- she and Casey were BFFs).  After they moved she had a son, so we had not even met the baby yet.  Casey was so excited to see her Maritza and Makayla.  We all miss them and it was really nice to catch up.  A great surprise ending to a nice Thanksgiving.

The following Friday we decorated the tree.  Casey LOVES Christmas lights so we usually get the tree up as soon as we can after Thanksgiving.  We set it up so that she could watch and direct us from the catch near the tree by using a mirror in her line of site.  It worked really well.  There were a few ornaments she had very specific ideas about and let us know if we put them in the wrong spot. 

We tried to get a few family/group pictures around the tree after getting it decorated.  Casey was not interested in getting dressed at all.  They came out okay, but we still need to get a better family shot (with clothes on) for the holiday. 

Grandma Barnes and Uncle Larry went back to Indiana the Saturday after Thanksgiving.  Grandma Barnes has been having some health issues of her own, and was actually in the hospital shortly before coming out, and ended up back in the hospital soon after getting back home.  Hopefully she is getting some rest now and recuperating well. 

Soon after wrapping up Thanksgiving celebrations I got a really nasty bug and was down for a few days.  Just as I was able to get out of bed Casey's nurses ended up getting sick as well.  It was a long week.  Usually the week after Thanksgiving I get a huge leap on shopping, decorating, baking, cards, etc.  I accomplished NOTHING that week.  I was pretty happy to be feeling back to my usual self after a full week and did my best to make up some time last week.  I had to give up on a few things.  I don't think we are sending cards out this Christmas.  Poor Tim has had to eat a lot of take out and left overs recently too.  I feel like after this weekend I am okay on time again.  I should be able to get back to my normal schedule (at least for a few days). 

We have a few labs and follow up appointments coming up with Casey's tummy issues.  We really hope to at least have a good plan if not a resolution by 2015.  We'll let you all know as we get more specific details to share.

We hope that you all had a wonderful Thanksgiving.  We should be able to get another tummy update posted before Christmas.  Hopefully that one will have some direction and answers. 

Happy Thanksgiving

I don't know where 2014 has gone, but Thanksgiving is just a day and half away.  I love turkey!  There is a commercial for a sandwich meat talking about how if you do this or that "you may be a turkitarian..."  I am pretty sure I am a turkitarian.  I think the only one I have ever seen love turkey as much as I do is the dad from "Christmas Story" and the Bumpuses' dogs.  Usually we do Christmas as our house and my sister hosts Thanksgiving.  This year Tim's mom and brother are coming to town for Thanksgiving so we decided to do Thanksgiving here instead.  Tim has been working a lot on weekends and evenings to get the dining room table done.  He had a neighbor help bring it in today.  It came out sooo pretty!  It is going to be perfect for hosting a family Thanksgiving.

We pick up Tim's mom tomorrow and then my sisters, their families, and my grandpa will join us on Thursday.  My mom and John are out to sea this year, and my brother and his gang have other plans.  It will still be a nice gathering of family.  Casey is excited to play with her cousin Riley. 

Casey is still having a lot of tummy issues and can't seem to get over cdiff.  We saw the doctor again yesterday and he ordered some follow up labs.  We see another doctor in about a week to talk about the next step.  Until we talk with her, we don't really have enough information to share.  Hopefully we will have a new plan and some answers soon.  Listening to her tummy rumble and cleaning up these awful diapers is no fun at all- for any of us. 

Casey is loving Girl Scouts (or Daisies).  She is going to be selling cooking mid-January.  Be sure to let us know if you want to buy some so we can request enough in our supply.  January will be here before you know it.  Christmas is only a month away!!!!  I need to get moving on shopping. 

It seems that last week everything that could break, did break.  The pool cracked, the last Medela (the good suction machine) broke, the sensors on our van tires have gone crazy, and I think there were a few other small things too.  Luckily the pool guy came right out and they are working to get it fixed ASAP.  We got another type of suction machine.  It's not as light or easy to carry around, but it works and this one is covered by insurance (and available in the US without paying import taxes).  So yes, things broke, but it wasn't the end of the world.  We still have a lot to be thankful for this Thanksgiving.  We are focusing on the good stuff, and there is lots of it.  

We hope that everyone has a safe and happy Thanksgiving.  We will post more after the doctor appointment with details on what's next in the battle against cdiff (I'm not sure if it's still a battle or if we can call is a war now?). 

Halloween

Casey had a GREAT day!!!  She woke up bright and early (3AM) and had a rough start.  Some tummy issues made us wonder if she was up for her deliveries today.  She calmed down and was ready to go right on time.  Her mermaid costume was a big hit everywhere she went.

Casey is up to 16 doctors now.  2 are brand new, and 4 we only see as needed (luckily we haven't needed them recently) so we took goodies to her 10 regulars and her PT up at the hospital- 11 deliveries in all.  She was eating up all the compliments everywhere we went.  All of the doctors, nurses, staff, other patients, everyone told her how great she looked and she was loving the attention.  While I was talking to one PT Tim was talking to Casey's PT and Casey's nurse was chatting with the photographer.  After a few minutes (or seconds) of Casey not being the center of attention she quickly reminded us that this is her day and we need to pay attention to her. She is such a little stinker.

When we took her to the trunk or treat earlier no one knew she was supposed to be Boo.  Everyone knew exactly who she is today.  She got lots of stickers, some necklaces and even a little puppet while we were out.  She needed a little suctioning in the car, but for the most part she was doing great all day.


Tim is off this week and so he was able to join us this year.  I am not sure if this is our 4th or 5th year doing this, but he is usually working and just hears about it after we get home.  He was pretty excited to be able to go with us.  He saw how much she loves doing this first hand.  I think he may try to take off when we go next year too. 

After a long day Casey needs to get some rest.  We will see if she is up for going trick-or-treating or to the block party a little later this evening.  She has been all about hanging with her friends lately.  I am sure if she is able, she will want to be there.  If she needs to rest more she can help hand out goodies here instead.  Either way I am sure she will have fun tonight.

I had a little free time and thought I would go ahead and update on her deliveries.  I will do another post this weekend on tonight's fun activities. 

The recipe we made this year is Pumpkin Crunch Cake.  Someone made this at my grandparents church a little while back and it was so yummy.  Hopefully our attempt was yummy too.

Born to be a Star

We have always joked that Casey has been a diva since she arrived.  She has a way of getting everyone's attention and making everyone fall in love with her.  She has even upstaged some big celebs.

The hospital where Casey was born was known through out the Los Angeles area as one of the celebrity birthing hospitals.  The Labor & Delivery unit was top notch and many of the pictures you see in the tabloids of celebs taking home their babies are taken in front of this hospital.  Casey was born on a Sunday and the previous Tuesday the hospital was crawling with paparazzi.  This was the hospital that delivered Suri Cruise and Brooke Shield's daughter, Grier.  All of the hospital staff was a buzz.  Did you get to see Suri Cruise?  Where you on the floor when Katie and Brooke delivered?  When you would get on the elevators all conversations were about the recent celeb babies.  That was until Sunday night.

Casey's birth was unlike any that most people have or ever will witness.  The fact that she and I both survived was nothing short of amazing.  The hospital was no longer talking about baby Suri, but now all of the chatter was about "that scary birth", and can you believe they are still alive.  I still remember the first time I got on an elevator to go visit Casey in the NICU after I had been discharged.  I was wearing normal clothes so no one knew I was "that mom".  Tim and I boarded the elevator and listened to nurses talk about us!  It was kind of surreal.  No one said our names, and no one broke any privacy laws, but we knew exactly who they were talking about.  The entire hospital was talking about Casey.  She upstaged Suri and her role as the diva was only beginning.

At 6 months old Casey went in to get Botox injections.  This is common treatment for kids with Cerebral Palsy that have stiff muscles.  But, Casey took it up a notch.  Casey received her Botox injections in Beverly Hills- of course.

Since Casey can not close her eyes and she doesn't blink, we are always trying to protect her eyes.  Usually we do this with sunglasses.  They serve a real health purpose, but they add to her diva status.

Now Casey has added her own paparazzi.  For the next 6-8 months a photojournalist, Ilana Panich-Linsman, will be following Casey around.  She is doing a project to show how much Palliative Care has changed over the years.  She will be following 3 local families around.  She will get some pictures of Casey doing all kinds of things (good and bad).  Hopefully with a long range of time like this she will be able to show an accurate illustration of Casey's life.  We think this is a great story that needs to be told and we are pretty excited to be part of this project.  We are also pretty excited to have some great pictures of Casey when it is all done.  She even offered to do some family pics.  We are excited to see how this story comes out.  A lot of Ilana's stories (you can see in the "In Print" section on her link) are seen in some big publications like New York Times, Wall Street Journal, etc.  Maybe Casey can finally get her record deal out of her new found fame :) 

Halloween Party

We LOVE Halloween and decided that this year we wanted to throw a little party.  The party was so much fun.  Casey had a blast.  Everyone wore costumes, and I have to say I was really impressed with how great all of our friends costumes were.  We had trophies for the best group, kid and adult costumes and everyone voted.  It was close since there were so many good ones.  Our winners were Princess Zelda for the kid category, Morticia Addams for the adult category, and the group went to a family that all dressed as characters from Alice in Wonderland.  We had pirates, vampires, pigs, mermaids and all kinds of great costumes at the party. 

We hired a babysitter to help keep the kids safe and entertained (and to keep the house safe too).  That was a FANTASTIC idea!  The kids had so much fun playing with her and the adults were able to enjoy themselves as well.  We will definitely have another party next year, and we are already looking forward to it.

Casey had a great weekend.  She was able to tolerate being in her costume and in her chair for most of the party.  She was so happy sitting on the patio and hanging out with her friends.  When we took her to bed I pulled her out of her chair and laid her down.  I noticed that at some point someone put a fake eyeball in her hand.  She was so proud and held on to it until she was all tucked in.  She now has a fake eyeball next to her bed :)  It doesn't match the fairy decor, but it makes her happy so it can stay.

She is looking forward to visiting all of her doctors on Friday to pass out treats and tell them thank you for another year of all of their hard work.  Last year after making the rounds she was wiped out.  If she is up for it this year there is a block party in our neighborhood and some of our neighbors invited her to trick-or-treat with them.  Hopefully she is up for some stuff, but we just never know until the moment comes. 

Here are some party pictures, and we will post more after Friday's activities.

Quick Health Update and Some Fun Stuff...

Casey has been to a handful of doctor appointments since our last post.  Infectious disease has her on a 6 week course of antibiotics to hopefully finally clear out the cdiff.  Casey's neuro changed her medications a little to hopefully get her seizures more controlled.  Casey's GI is helping to keep Casey comfortable with tummy aches while we get her over cdiff.  We took Casey to get fitted for a new orthotic.  This one will be designed to hold her arms in a position that will open her chest up a little.  It won't correct her barrel chest, but the hope is that it will keep it from getting worse and help keep her lungs from being impacted.  They are having to do the entire thing custom (as is everything for Casey) so it will take a little while to get it done.  It may take a few tries to get it right, but hopefully once we do it will help her a lot.

Now to the fun stuff....

Casey did not make it to her first Girl Scout meeting, but she did make it to this weeks meeting.  She was so excited to wear her uniform and go play with her friends.  Her troop has 7 girls, including her.  She knew 4 of them and she was happy to make 2 new friends.  They did crafts, read a story, worked on a group/teamwork project and had lots of fun.  She is looking forward to going back very soon.

She made it back to her dance class too.  She loves to dance and was very chatty telling her friends how much she missed them while she was out sick. 

We have tried out the heater on the pool.  It works pretty well.  Hopefully she can get in some more pool time before it gets too cold.  She has been getting some swing time too.  She loves when Daddy grills- while he is on the patio cooking dinner she gets to hang out on the swing :)  I love when Daddy grills too!

This weekend we had my sisters, Cappy & Grandpa John, and GP over to celebrate October birthdays.  Casey had a good time visiting with family.  She told them all about her Halloween plans and showed them the ghost she made in Girl Scouts. 

After the birthday celebration Casey went to a Trunk or Treat.  A local hospital hosts one each year for kids with special needs.  We missed it last year, but Casey had fun this year.  About half of the trunks (sponsors) had non-food treats as well as candy.  Hopefully each year more and more people add non-food treats to their goodies.  One booth had the Mommies of Miracles decal up spreading the word about our Trick-or-Treat Program.  That was pretty great to see.  Casey has 2 costumes this year.  She wore her Boo costume to the trunk-or-treat.  She was pretty cute Boo.

If you have not already, be sure to pick up some non-food treats and print out your decal and/or register your address to let kids know you are participating in this year's Trick-or-Treat Program.  As extra incentive this year, every registered address is entered for a chance to win one of three $50 Walmart Gift Card.  Anyone that shares pictures of the decal on their home and/or pictures of their kid wearing the badge will be entered for a chance as well.  Full details on how to enter- click here.  Casey (and Tim & I) had our picture in the paper yesterday with a story about the Trick-or-Treat Program. 

Casey has a few routine appointments coming up and lots of fun stuff planned for Halloween.  We'll post again soon with more updates.  Until then, we hope everyone is doing well.

Swinging Girl Scout

After our last post Casey was starting to get a little better, but then seemed to take a few steps back.  It took us a long time to get her off of oxygen and to a point where her lungs started to sound better.  Sadly she had to miss a lot of school, dance, and pretty much everything over the past 3 weeks.  As of last week the pneumonia seems to be much better.  We are still dealing with cdiff and some terribly tummy stuff, but her lungs do sound much better (FINALLY).

The cdiff has been on and off since late June.  We have heard stories of people going years to get rid of it.  We can't really sit and wait on this.  With Casey always just barely hydrated, each recurrence of cdiff takes more and more fluids that she just can't spare.  This last run of cdiff caused her a lot of pain as well.  After talking with Casey's pediatrician and palliative doctor we are going to take Casey to see Infectious Disease this week.  Hopefully they can help us come up with a way to be rid of cdiff for good this time.

We are going to try to get back onto a normal schedule this week.  Casey has school, and dance.  She has barley done any school so far this year (I think only 2 days).  I guess this is just one of the many reasons we opted for homebound school for her.

Casey loves to swing.  When we go to the park that is always what she wants to do, she loves to swing at the PT gym at the hospital, really an chance she gets she loves to swing.  We have been wanting to get her her very own swing for some time now.  Our old house didn't have a place where we could hang one, but one of the things we looked for in our current house was a place for a swing.  She uses what is called a platform swing.  It basically lets her lay down while swinging.  There are a lot of therapeutic benefits to swinging as well enjoyment.  Casey's Ortho, his nurse and Casey's PT have been trying to help us get a swing for Casey all year.  It finally came in and Tim was able to get it installed.  I think it's safe to say she likes it.  Between the swing and the pool Casey is becoming quite the outdoorsy kid :)

Some friends of ours have done something really special for Casey.  Their little girls are some of Casey's friends and are all doing girl scouts this year.  They knew that I was not interested in signing Casey up if she was going to get stuck in a group of girls she may/may not know.  Instead our friends decided to go through all of the training, background checks, etc in order to start their own group.  This way Casey will be with girls that she already knows.  This is HUGE!!!!  Knowing that the girls are all good around Casey, knowing the environment is one Casey does well in, and it only being a few times a month makes Girl Scouts something Casey CAN do.  Our friends doing this so that Casey can participate means so much to us.  Casey is very excited!  This week will be their first troop meeting.  I am not sure if her troop will be selling cookies or not, but if so, she will be hitting you all up soon :)  

I will post soon with more details on the ID appointment, how Casey likes Girl Scouts, and more.  Until then we hope everyone is doing well.

Can't Catch a Break

This poor kid has had one thing after another for what feels like all of 2014!  As soon as we get her over one thing something else comes along.  She is overdue for some time off and fun stuff.

She had a good week recently and was able to start back up with dance, met and liked her new teacher, and played some with friends and her nurses.  We thought things were looking up.  Out of no where this week things took a turn.

On Monday Casey had a lot more secretions than normal.  Some days are really bad, and there is not much we can do about that.  In 4 hours she had more than a typical 24 hour period.  When we took her to bed that night her heart rate was up pretty high.  When she gets dehydrated (which happens easily) her heart rate going up is one of the first signs.  We figured with as much as she had out, dehydration made sense.  We had her nurse giver her extra fluids that night and did not worry to much about it.

Over night Monday Casey's heart rate came down some, but not as much as we expected.  When she woke up Tuesday it started going back up pretty quick.  She also started running a fever.  After Tylenol Casey was still running a fever and her heart rate was still on the rise.  Something was up.  When we talked to her pediatrician they ordered blood work, x-rays, urine, all that fun stuff.  We got Casey dressed and headed to the lab.  Before we could even get out of the garage Casey started getting MUCH worse- and fast!  Her fever was climbing, along with her heart rate and now she was shaking and not breathing well either.  We decided instead of doing out patient labs that we needed to head to the hospital.

Luckily Casey has VIP status and we were able to call on the way to have them ready for us.  They quickly got blood work and x-rays going as well as an IV placed to start pushing some fluids.  It took a little while, but Casey did finally start to settle down some.  Her breathing was better, but her heart rate and temp were still up.  A normal heart rate for her when she is awake is in the 130's.  Her usual temp is 98.5.  When we got to the hospital she was in the 220's heart rate with a 102.9 fever (which explained the shaking and breathing trouble).  After a few hours and some fluids she was back in the 160's heart rate and 99 temp.  The blood work showed infection and the x-rays showed a pneumonia in her upper left lung.

Casey has chronic aspirations, and we deal with an aspiration pneumonia at least once every 12-18 months.  We have gotten really good at catching them early, treating at home, and minimal impact to Casey's routines.  All of the normal signs that we see did not show up with this one.  This one caught us off guard and hit Casey hard.

We got admitted and they started some IV antibiotics right away.  Shortly after getting to the room Casey had a HUGE BM.  Maybe 10 minutes after getting her cleaned up and changing all the bedding she had another.  On the 3rd one in an hour she started getting back into the higher temp, shaking, high heart rate, and now she also looked puffy and modeled.  All of the doctors and nurses came in to try and help us calm her back down.  It took a little while, but she did eventually start to settle again.  We were not sure if the fluids, antibiotics, or BM triggered the freak out, but it was kind of scary.  When some people have a hard time with a BM it can trigger the vagal nerve.  Being that this ties directly back to the brain it makes the body do all kinds of crazy stuff.  It's possible that is what we saw.

Around 11 that night Casey had another freak out, without the BM, and luckily she recovered from that one a little quicker.  Around 2AM Wednesday morning things started looking better.  Casey's heart rate came down into the 140's, her breathing was MUCH better, the temp was final back to 98.  By 6AM her heart rate was in the 120's (her sleeping heart rate is usually 80-100).  She still needed oxygen to help her breath, but her breathing was not as labored, much slower, and she could breath without the oxygen- just not as well as she usually could.

When the doctors came in to round they were very pleased with how much Casey had improved.  They let us go home later that day.  We ended up there about 24 hours.  By the time we figured out what was going on we were pretty much on our way home (that is why no one got a phone call- it wasn't personal).

Our main day nurse in on vacation this week.  We got home later on Wednesday so we did not have a day nurse that day (luckily we did have the night covered).  The nurse that was going to pick up Thursday got sick so we did not have that day covered either.  And we don't usually have a nurse on Fridays at all.  We did have Thursday and Friday night, so that does help.  I am up with Casey tonight though.  Hopefully it will just be a couple more Saturday nights for me and then we will have our nights covered again.  After being up with Casey in the hospital Tuesday night, then not having much help during the days this week, and now being up again tonight, I AM WIPED OUT!

Casey had a rough morning Thursday, but since then she has been slowly improving some each day.  She is still on oxygen and needed her bipap on Thursday.  She spent some time off of oxygen yesterday and we will see if she can go a little more today.  We want to be sure she recovers so we are not rushing her.  After we got home from the hospital they called to tell us that Cdiff is back again :(  This round is not as bad as previous rounds.  My mom restocked my candle supply too, so we are all set.  We have Casey on an antibiotic for the pneumonia, but we are holding off starting a second one for Cdiff.  Hopefully she can get by without needing it this time around.

Some of our friends came by to bring us lunch on Thursday.  That was a nice treat.  One sent us yummy Tiff's Treats Friday too.  Tim and I do love cookies :)

Casey had so many fun things planned this weekend.  I always hate when she is sick, but it breaks my heart when she has stuff she is looking forward to that I have to cancel.  One of her friends had a birthday party Saturday that she had to miss.  Sunday (today) there is an organization here in town (UR Our Hope) that does an annual fundraiser.  This organization does a lot for families like ours, and they always have the fundraiser at Casey's favorite Chili's.  We still have a Chili's menu around here that we will let her look at later, but it's not the same as going out to eat.  Hopefully with lots of work and rest we can get her feeling better this week and do something fun next weekend to make up for missing so much.

I will try to post more later this week on how she is doing.  Compared to Tuesday morning, she is already doing MUCH MUCH MUCH better.  Each day is better than the one before so I think we are on the right track.  And again, we are sorry no one was called.  We have not had a chance to do much of anything this week short of cancel appointments and any plans that we had.  

School, Dance, Nurses and More....

We knew change was coming, but boy did it come.  It feels like we have been running in circles these past few weeks trying to get back on a routine.  Hopefully in another week or two we will have things running a lot smoother.

We have a new night nurse that recently started.  This post is being written at 3AM as I am training her this week.  It usually takes us a good week before we feel like we can go to bed, and a good month (or 3) before we feel like we can leave the house with a new nurse.  I am exhausted from being up all night and then sleeping 3-4 hours to get up and still try to help with Casey's day stuff.  I am hopeful that this nurse will stick around a while and maybe I can back to regular sleep soon. 

Casey started school.  She missed her first few week.  One day the teacher came out and she and I talked some about schedules, goals, etc. but Casey was not up for even meeting her that day.  The second attempt that week went even worse so we told her not to even come.  This week went a lot better.  Casey did 2 out of 3 of her days.  She seems to like her new teacher.  The teacher is soft spoken, which is a good thing with Casey.  She told us she loves arts & crafts and anything involving glitter.  I think she and Casey will get along just fine.  We had to cancel today because Casey was having seizures and the medicine we give her to stop the seizures pretty much wipes her out for the day.  Hopefully next week will go well.

We are still transitioning from doing out-patient physical therapy at the hospital to doing physical, occupational and speech therapy at home.  The PT was supposed to come out today, but we had to cancel her just like school.  She will be here Monday instead.  The ST came out to meet Casey and seemed really good.  The OT called, and I called her back, but I never heard back from her again.  I will try to find out what is going on with OT next week.  I know it's hard to start a new schedule when school is starting.  Everyone is shuffling things around.  Hopefully next week we can get things moving with therapies so we can start working on a good schedule for Casey.  We are going to work on self soothing goals, and calming techniques.  I really hope that with help from therapy we can get more stretching and relaxation tools to help when Casey is having a rough day.

Casey is getting a therapy swing.  We are VERY excited about this.  We should get it this week, and as long as Tim can find time to install it, she should be swinging in no time.  She loves to swing.  Between the swing (that will be going on the patio) and the pool, she is never going to want to come back inside.

Dance started back up this week.  Casey was thrilled to see her friends.  About half of the class is back, but not everyone.  There were some new kids in class and I am sure Casey will become great friends with them in no time.  When we were getting her dressed I asked if she wanted to wear pants and she ignored me (her way of saying no).  I offer shorts, again to be ignored.  I told her she had to wear something or we could not leave.  I offered both again and still got no response.  I then offered a tutu and got a very big response.  She knew she was going to dance and was just waiting for me to offer the proper attire.  She of course looked beautiful

We had a few routing doctor appointments this week.  Casey saw her Ortho on Wednesday.  She has been seeing him every six months for years.  In addition to all of her dislocations and contractures they like to keep an eye on her spine.  Casey does technically have scoliosis, but it is pretty stable so they just watch it at this point.  The doctor was pretty happy with how Casey is doing- so happy in fact that we do not have to go back for a full year this time.  Of course, we can call if we need to go in sooner.  I was worried about her elbows looking worse.  He said they are worse, but that they are not causing her pain and there is nothing that can really be done about it.  He referred to her elbows (as well as all of her other dislocations) as the Casey conundrum.  We corrected him and told him we call them Caseyisms.  He liked out term better.  Since she is so stiff, she is going to continue to cause dislocations and contractures.  Even if he did surgery to fix them, they would likely still go back in time.  We have ZERO interest in putting her through any surgery that is not necessary and he agrees that surgery is not a good choice for Casey.  He also warned us that as she gets bigger, breaks are going to likely be something we will see more and more.  He told us to just call when we suspect a break to avoid the ER.  If we can prevent breaks, and all other ortho related issues, we will just follow up again next year.

Casey had her GI appointment this week as well.  She sees GI every 3 months.  She still has stomach bleeding issues, so they want to keep an eye on her, run labs, and make sure that it does not become something worse.  Kind of like ortho, GI is another area that there is not much we can do.  They could do exploratory surgery to "try" and figure out what is going on.  They may be able to find something, and that something may be able to be repaired, but the surgery would take a huge toll on Casey and they don't think that anything they would find and possibly repair would be worth the risk of surgery.  We agree completely.  We don't like the GI bleeding, but we have learned to manage it.  The doctor added Iron back into Casey's daily routine.  She doesn't need it now, but he wants to be sure that she doesn't get to a point like we saw last November where she dropped quickly and needed to check in to the hospital and get a unit of blood.  We hope to avoid doing that this year- especially during cold and flu season.

Speaking of cold and flu, I should have taken a picture earlier today.  Casey is still a big cuddle bug and loves to snuggle with mom and dad.  Tim started feeling bad yesterday so I would not let him anywhere near Casey.  He was missing his snuggle time (we like our snuggles just as much as Casey) but still feels bad.  In order to get some snuggles he had on a face mask and had to scrub in before taking Casey.  It was a Kodak moment and I missed it.

Casey is still having a fair number of bad days.  We are doing our best to try and get her seizures back under control and more good days for the princess.  I really hope that the new therapies will help.  We have changed/increased some of her seizure medications this week too.  Time will tell if the change is helping. 

I'll try to get some pictures of Casey in school and on her new swing in the next week or 2.  Until then, we hope everyone is doing well- and for all the kids going back to school- we hope you all have a fantastic year!

We Need More Candles

Things were going pretty good for a few weeks.  Casey seemed to be over all the crud and back to her sassy self.  It was really nice.  I was stressing about all of the changes coming our way, but I was loving having my spunky girl back to causing trouble.  That was until Monday afternoon.

Out of nowhere Casey started having all kinds of issues again this week.  She wasn't having BMs, then she was having too many, and bad ones.  She wasn't having any wet diapers.  Her heart rate was through the roof.  She had run a low grade fever off and on.  Something was going on.  We talked with her pediatrician (who is amazing for the record- we love her).  She had us take in a stool sample and started some antibiotics again.  All signs seemed to point back to cdiff- AGAIN!  All of the runny, smelly stools led to Casey being very dehydrated as well (the high heart rate).  She wasn't having any wet diapers, and when we would cath to empty anything in her bladder we would get very little and very dark urine out.

Casey has a hard time taking in a lot of fluids.  Since her feeding tube is into her jejunum instead of her stomach it can not go at a fast rate.  We were giving her as much as she could tolerate, but we could not seem to catch up.  On Wednesday she had been on the antibiotics for 24 hours and she was still not having wet diapers and her heart rate was still up.  Her pediatrician ordered some IV fluids to run to help get Casey rehydrated.  It took all afternoon and into the evening for the company to get the supplies delivered to our house.  Once the supplies were delivered we had to call our nursing company to send out a nurse to place the IV.  It was around 9PM when the nurse arrived.  She looked around and tried once with no luck.  Another nurse came out to see if she could find a good vein.  She never found one worth trying.  As much as I really wanted Casey to have the fluids, I was glad that they did not treat her like a pin cushion.  Since they could not find anything they said they were going to send out another nurse in the morning to try again.  If Casey got worse we would take her to the ER.  Luckily the antibiotics had started to slow down the stools, so that helped give Casey a chance to start building her fluids back up.

Thursday morning the other nurse came out and gave it her best.  She tried 3 different times.  She used to be a NICU nurse and was telling us that the veins on Casey are smaller and harder to thread than the NICU babies she used to work on.  We have heard that a few times.  Since Casey is so stiff and has so many contractures and dislocations her veins don't run where or how they should.  It seems like every time she needs to get blood drawn or an IV placed it gets harder and harder.  In the hospital they usually will call in the PICC team to place the IV using an ultrasound.  If I knew how to read an ultrasound, and could get one for the house for a decent price I would totally invest in one.  I sadly can not read them.  They just look like bad reception on a TV to me.  Maybe I should look at taking a class in this or something. 

Since we were not able to get an IV at home, it was very likely that we would have to take Casey in to the hospital for at least 24 hours.  The good news was that Wednesday night Casey did have some wet diapers.  On Thursday morning she wasn't having any, but her heart rate was a little better than it had been.  We called Casey's pediatrician with an update on everything.  She agreed to give Casey until lunch.  She wanted Casey to get her heart rate down and to have a wet diaper and then she would be okay with her staying home.  Casey slept all morning and did get her heart rate down even more.  She still want not having wet diapers though.  When her doctor called at lunch she said she would give Casey until 4PM to have a wet diaper, or we would probably need to take her in.  We all did the peepee dance and did everything we could to get her to pee.  Nothing helped.  We cathed her and got a tiny bit out.  Other than not peeing though, Casey was starting to look a lot better.  Somehow I was able to convince her doctor to let us keep pushing fluids overnight and see how she does.  Luckily, Casey had a really good night.  She had 2 good wet diapers, her heart rate was back to its normal range, and she slept great.  This was fantastic news to be able to deliver to her doctor this morning.  We have avoided the hospital.  We have gone through a lot of candles this week though.  I think we may have to go restock our candle supply soon.  We are getting down to just the holiday candles.  That's okay with Tim though, he loves the cinnamon Christmas candles. 

You may be asking the same thing we did- how on earth did she get cdiff again, we just got her over it?  Well, I guess she was not fully over it.  She did have a negative result on the last test, and they think it was laying dormant for a few weeks.  The previous round of antibiotics were on a very low dose for her size.  This time the have quadrupled the dose to hopefully knock it out this time. We are not sure what triggered it to come out of the dormant phase.  We will probably never know since it really seemed to be out of nowhere.  At least we have a handle on things.  She is responding to the antibiotics, and her fluids are getting back in sync.  Of course this would all happen the week we finally decided to make plans again.  The people we made plans with totally understand though, so that helps.  As long as you don't get near the diapers she won't get you sick.  And, she seems to be perking up some as of today so I think she will be up for a little fun this weekend.  I really hope this round of antibiotics really knocks out the cdiff, and that I find a good sale on candles :)

Change is in the Air...

A quick update first.  Casey is doing a lot better.  The ear infections have cleared out, and her follow up labs showed she no longer has cdiff.  Yay!!!  As soon as she got over these though she somehow hurt her hip.  They are both dislocated (have been since pretty much birth).  We are not sure if she just moved it wrong or what, but all of a sudden Saturday (7/26) she was crying every time we had to change her diaper.  Of course that would also mean she had a lot more than normal diapers that day too.  That continued through the weekend.  As soon as we were done changing her and she resettled (within minutes) she would be fine again.  I didn't think it was broken, but it was definitely hurting her.  On that Monday morning I got her out of bed and was waiting for the Ortho office to call and see about getting her in.  Before the office opened I changed 3 diapers and she didn't seem to care about any of them.  Her hip seemed better so we opted to just talk with her PT on Thursday of last week instead.  She agreed that it must have just been pulled or turned wrong and that Casey seems fine now.  We are still watching it, but she appears to be over what ever it was.

Last week Casey's primary day nurse was on vacation all week and the other day nurse was out sick.  Both of our fill-in nurses were out of town as well.  That's okay though, I got to spend lots of time with my favorite little princess.  Over the weekend I asked if she was tired of me and ready for her nurses to come back and she was quick to say yes.  I was glad to have the day nurses back too.  As much as  I love hanging with Casey, I don't get anything else done when it's just me and her- no housework, no errands, nothing done with my MOM stuff, most days I don't even get dressed until the afternoon.

Casey had lots of visitors over the past couple of weeks.  Her friend Anjali came over to hang out while her mom and Tim worked with power tools in the garage. Her great grandpa came over to watch ponies and visit with her for an afternoon.  One of her night nurses just became a grandma and she brought over her new grandson to meet Casey.  She said Casey is his first little friend.  She had some friends in the neighborhood come over to swim.  Some other neighborhood friends came by to play and visit while the dads again- hung out in the garage with power tools.  Even her dance teacher stopped by.  Casey wasn't able to finish dance camp so her teacher came by to bring Casey her tiara.  It was nice to have so many visitors break up the days while we were home-bound without a nurse.

We have lots of changes in the works for September.  Some good, some not so much.

We finally found a weekend night nurse, but she has already told me that she is not staying.  One of our other night nurses is moving to days in September as well.  That will mean we have 5 nights a week that we need to fill with a new nurse.  I really hope it does not take as long to get us someone this time.  I am still not physically recovered from the last nurse search.  Staying up all night to take care of Casey, getting 2-4 hours of sleep, then getting up to run Casey to appointments or try to get my own stuff done only to stay up again and again and again takes a HUGE physical toll on me.  The thought of having 5 nights each week coming up is making me a big ball of stress. 

Casey sees a PT (Physical Therapist) once a week right now at the hospital.  She has been doing this since she turned 3 and the school district took over her home therapies.  We are going to try to use a different company during the school year to provide home therapy for Casey.  We tried the same company that provides our nursing and I was not happy with the therapists at all.  Now we are going with a company that only does therapy, so I am hopeful that it will go better.  This is going to start in September as well.

School starts in September as well.  It really starts in August, but with home-bound school it usually takes an extra week to get the schedule started.  We liked Casey's teacher last year, but we know she will not be coming back.  I have no idea who the new teacher will be.  I hope that it's someone good that Casey likes.  I hope we can find a good schedule this year that works well for Casey too. 

Then, because September is all about changes, we are also starting the new dance season for Casey.  This is a good change though.  Casey loves her dance class.  Her teacher is actually in Africa (or on her way) with a mission group right now.  We are excited to hear all about it when she gets back.

We are starting to get the annual inclusive Halloween stuff rolling again.  Be on the lookout for more information coming in the next week or so.  We really hope to get some big media support this year to spread the word.

Drum Roll.....

... And, we are positive for Cdiff!!!  I think we kind of saw this one coming.  It has been a long time since she last had it.  Although, it has already gotten a little better.  We had 10 stinky diapers Sunday, 4 Monday and only 2 today.  The resident working with her pediatrician called with the results and to figure out our plan of attack.  I think we officially stumped her.  Casey is good at stumping her care team.  Most of them are very familiar with the term- Caseyism.

The go-to drug for cdiff is Flagyl.  A little while back we tried Flagyl when we thought Casey had a urinary infection.  It did not go well.  She had a lot of respiratory issues, increased seizures, and it was a mess.  We add it to our no no list.  When the resident called and asked about Flagyl she wasn't sure what to do as an alternative.  She did some research then called back to say we could go with Vancomycin.  We have done vanco in the hospital by IV a few times and its one that can build up in the system so they have to check level daily.  When I mentioned that to her she said that the gtube version does not have to be checked and is the best option for Casey.  Okay, next question, what if it's not a gtube but rather a jtube?  Drugs are absorbed differently and we know that some antibiotics are not jtube compatible as they need to be absorbed in the stomach.  The poor resident had to hang up and do some more research.  I guess we are doing our part to help train the doctors of tomorrow.

After a little more time she called back and we are good, Vancomycin is jtube compatible and she called it in to our local compounding pharmacy.  Sadly since Casey had such high fevers over the weekend and is fighting off the double ear infection and strep we need the other antibiotic as well.  One antibiotic is hard on Casey, two is not going to be fun at all.  We will pick up the other one tomorrow as well as some good probiotics.

About a month ago at Casey's GI appointment she weighed in at 42 pounds.  That is compared to the 28 pounds she left the hospital weighing last April.  That's a lot of weight for her.  She looks much healthier, but it was starting to get to the point that she was gaining too fast.  We reduced her calories a lot at that appointment to slow things down.  It didn't work.  She weighed in at 43.5 pounds at the pediatrician's yesterday.  I think she must be sneaking milk shakes at night or something.  The little princess just wants to grow I guess.  That's a good thing.

It's going to be a long week and half getting Casey over all of this and off of all the antibiotics.  Hopefully our next post will be of a happy spunky little girl feeling MUCH better, and smelling better :)

Wait... There's More

Casey's updates ended up taking much longer than I expected so I figured I would do the rest in a different post.

Tim is the youngest of 7 so there are a handful of nieces and nephews on his side.  The first niece got married at the end of June.  Since we did not have weekend nursing and Casey has been having issues we had to miss it, but we do with Katelyn and her new husband all the best.  We wish we could have been there with the rest of the family.

Right after the wedding Tim's mom went into the hospital (planned).  She had one surgery on Monday then a second surgery on Wednesday the first week in July.  The surgeries were both major, but went well.  She is home now and recovering.  Recovery is hard and she is not feeling great, but she is on the mend and we hope that each day she is feeling better than the day before.

My uncle had surgery today to replace one of his hips and goes in soon to have the other one done.  Surgery went well and we hope he has a smooth and speedy recovery.

My sister is going to have surgery on Wednesday to have a cyst in her throat removed.  Her recovery should be pretty quick, but I am sure she will have a rough week and weekend.

It seems like our family is all taking turns under the knife the summer.  We hope that after my sister's surgery this week that everyone can stay home and stay healthy and enjoy the rest of their summers.  I am getting to know hospitals, procedures, etc way to well for not being a medical professional.

On another note, we did find a new night nurse for most weekends.  She is just starting to learn Casey, but we are hopeful.  Maybe by the end of July we will be able to go out to dinner or something.  It takes so long to learn Casey when Casey is doing well.  With Casey having so many issues lately it makes it that much harder to train a new nurse.  This one is really sweet and is catching on to things pretty quick.  There is light at the end of the sleepless tunnel :)

Where were we?

Oh, that's right we were just chatting about our week from HELL in June.  Well, since then things did get a lot better.  Grandpa did well in rehab and got to go home just in time for 4th of July.  That was steak night at his assisted living center so he was really excited to be home in time for that.  He has been doing really well since.

We opted not to do the Botox in Casey's salivary gland.  We rescheduled the appointment all together, but when we do go later this month we will not be doing the salivary glands.  We talked with Casey's ENT and while he said some kids do really well with it, the biggest risk is the kids that don't.  Unlike medications she takes that we can just stop taking, once Botox is injected there is not undoing it if things go bad.  We would have to just deal with the bad until it wears off.  The bad with this particular injection would lead to airway issues and we just don't feel like that is a risk we are comfortable taking. 

Casey's neuro started her on a new seizure med during our hell week.  Casey did not do well with it and after a couple of weeks we ended up taking her back off.  Luckily since we can get her the stomach medicine she needs now, the seizures seem to be better controlled so the extra medicine may not have been totally necessary.

Once we finally got the medicine out of Casey's system she seemed to do a lot better.  She had a great weekend for the 4th.  We didn't have night nursing the entire weekend so we were too tired to do much, but we did manage to get out in the pool some, she watched some movies in her bean bag chair and we even went to see some friends.  The friends we went to visit are just down the road and just gott home with their new little baby girl.  Casey did great meeting the new baby and hanging out for a little while.  We really thought that over that weekend things were looking much better. 

On Monday the 7th Casey had a horrible day.  When we took her to bed that night we told her that she had to get some rest so she would feel better for her fun day on Tuesday.  She went right to sleep and had a great night. 

On Tuesday she woke up in a great mood and seemed to feel much better.  My grandpa invited her to come over to his place because the miniature horses that she loves so much were coming by for a visit.  Casey loves to visit Great Grandpa and she loves horses, so she was pretty excited.  As soon as her little friend, Mercy- the smaller horse, saw her I am not sure if Casey or Mercy were more excited.  Mercy gave Casey lots of kisses on both of her cheeks.  Then she wanted Casey to pet her and to snuggle.  Casey had her hands on her elephant that was on her lap.  Mercy tried to move Ellie out of the way so that Casey could pet Mercy.  It was really cute.  Casey had a great time.  After she stayed to visit with Great Grandpa a little bit and meet some of his friends.  She went home and spent some time in the pool that afternoon.  It was a great day.

On Wednesday we noticed her ear was smelly.  She has chronic ear infections so we didn't think too much about it.  She was moody and whiny all day, but we thought it was just an ear infection coming on and all would be fine.  When music therapy came to the house Casey cooperated some, but not much.  That night when we put her to bed we told her that Thursday was a busy day with dance camp starting, lunch out after, and then water therapy.  She went right to sleep and had an okay night - not great, but okay.

Thursday she was grumpy, but we got her ready and took her to dance camp.  There was a crowded table and we pulled her up to work on the craft with the other kids.  She started getting worked up and just continued to get worse.  We ended up leaving about 40 minutes after getting there.  She cried the whole way home and was a mess.  We decided not to go out to lunch, but instead to go home and let her rest a little before therapy.  Then with therapy since her ear was stinky, and now starting to drain some, we opted to do land therapy instead of the pool.  She whined and complained the entire way there, all through therapy and the entire way home.  We started the ear drops and usually once we start the drops she starts getting better right away and is much better if not totally better by about 12 hours.  

That night I picked her up to snuggle, like normal, and every 10 minutes or so she would just scream out in pain.  We could not figure out what was hurting her, but something had her really upset.  Tylenol wasn't helping and we ended up giving her morphine.  Even with the morphine she was still really worked up.  After we got her to bed she calmed down some and ended up having a pretty good night.

Friday she was grumpy but we decided to try dance camp again.  They moved the craft to the end of class since we thought maybe she was having some sensory overload issues.  She doesn't do well in crowded environments.  That was not the case.  She lasted less than 10 minutes on Friday.  I waited in the hall while her nurse went in with her.  I could hear her yelling and screaming from the hall.  We loaded back up and went on home. 

One of my really good friends came by with her 2 daughters and we went out so the girls could swim after lunch.  Casey was resting on the couch and did not want to go outside at all.  After a little while her nurse came and told me Casey was doing a lot better and that she wanted to come out and join everyone- great!  Since she had an ear infection I just sat on the side of the pool and let her put her feet in.  She was much happier than she had been in days.  In  the sun her nurse noticed that the fluid draining from Casey's ear no longer looked like ear goo, but rather it looked like blood.  So we move her to the chair and the nurse grabs the otoscope.   Sure enough, Casey's ear drum had burst.  This is new.  She gets ear infections a lot, especially in the left ear that has the cholesteotoma and never have we seen it burst and bleed.  It looked awful inside her ear.  We called the ENT and they told us that it is not a big deal.  They actually said it is good, when it burst the pressure is relieved and so she should feel a lot better now.  She did seem to feel better so we were happy with that assessment.  The rest of Friday and Friday night went okay.

On Saturday after getting her out of bed she was doing some of the pain crying again and her heart rate was going up.  We decided to play it safe and kept her home from her last day of dance camp.  We made the right call.  As the day went on she got more and more agitated.  She started spiking fevers, she was crying, screaming, it was a horrible day!  The night was not any better.  With morphine and tylenol we could not get her heart rate to come down.  Casey ended up needing oxygen since breathing with everything else was too much work for her.  We could not seem to get her fever down either.  Then Sunday morning she had a really loose stool early in the morning and it was beyond stinky. 

She had a second loose stinky stool less than an hour later and spiked another 102 fever.  We called the on call since none of these things are typical with her ear infections.  They called in hydrocodone as well as an antibiotic, but we had to wait until the pharmacy opened at 10 to pick anything up.  By the time the medicine was ready I think we had changed 4-5 runny diapers.  Each one was stinkier and nastier than the one before.  We know antibiotics can cause runny stools, so we called the on call back and said we were going to pick up both medicines, but we wanted to wait on the antibiotic since we added the new symptom to the list.  The hydrocodone helped get Casey's fever down and has kept it down since.  Casey was still on oxygen and her heart rate was still up, but much better than it had been. 

By the time we took Casey to bed I think we had counted 10 stinky diapers.  Usually she is a 1 poop kind of girl.  Tim accurately described the scent as the smell of a heavily used port-a-potty on a very hot day.  He nailed it, the entire house wreaked!!!  We burned a lot of candles.  By 11:00 last night however, Casey seemed to be doing much better.  Her nurse was able to turn off the oxygen and Casey kept her heart rate down without needing extra pain medication.  She had a huge stinky diaper around 3, but went right back to sleep.  She had another stinky diaper around 6:30 this morning and that one set off the morning.  By this morning 9 she was back on oxygen and had been loaded up with pain medication again.  

We took her to see her pediatrician before lunch.  She confirmed that yes, the right ear was infected, had ruptured, and looked awful.  The left ear also appears to have an infection.  Then she looked in Casey's throat and said that Casey also has strep throat.  I have no idea how she got strep.  She hasn't been around anyone sick.  Ugh!  When we asked about the stinky diapers she agreed that it was not a typical symptom of these things, but we are dealing with Casey that doesn't really like to follow the rules.  When we told her how bad they smell she had us get a sample to test for cdiff.  Casey had cdiff a LONG time ago, but I do remember those being some stinky diapers- and lots of them.  Shortly after we got home she gave me enough to collect the sample.  Hopefully we will get those answers later today or early tomorrow.  She goes to see her ear doctor later this week too; she is not going to like him checking her ears this time around.  We really hope that the burst right ear does not develop into a cholesteotoma like the left ear. 

I feel bad that Casey missed so many of the fun things she has planned last week.  Hopefully we can get her better this week and maybe plan some fun stuff for next week.  She has been fever free since yesterday morning, and we started the antibiotic today.  Poor kid just can't seem to catch a break lately.  She is resting now and looks exhausted and pitiful.  She hasn't been screaming from pain since Saturday, so that is MUCH better.  Those cries/screams just about kill me (and Tim).  I hate when she feels so crummy.  This is her first time with a double ear infection, first time with a burst ear drum, and first time with strep.  Lots of first right now.  Hopefully we can move them out quickly!

Week from HELL

Monday morning came and Casey was still not doing well.  Now in addition to needing oxygen at night she was needing some help during the day as well.  her seizures were increasing and the amount of stuff she was needing suctioned was out of control.

We talked with Casey's doctor thinking it must be a respiratory issue.  Possibly still leaning toward a pneumonia even though the previous checks said otherwise.  Her doctor wanted to order blood work and chest xray as well as some images of her stomach since we are still having the carafate clogging issue.  We also talked about getting some IV fluids since Casey gets dehydrated so quick and easily.

We had a few choices, we could drive all over town to different labs and xray places while trying to coordinate with an infusion company to deliver fluids and our home health company to get a nurse out to start the IV.  This coordination would have gone well into the night and possibly not even have been done in one day.  Another option was to do like we did back in November and direct admit Casey to the hospital, get everything we need, then head home.  The trick with admitting is that as soon as she is admitted our home nurse can no longer be on the clock.  If Tim were home, we likely would have gone this route.  However, since Tim was in India, we had to go with plan C.  Our final option was a lot like the direct admit, but instead of admitting we go to the ER.  We did run a big risk though.  If they had found anything there was a chance they would have wanted to admit Casey.  If the nurse has to leave then I have no way to get Casey home, I have no one to sit with her so I can go to the bathroom, it is very stressful to even think about.

Casey's pediatrician called ahead so that the ER was ready for us with a plan.  When we got there we met her palliative doctor who let the ER team know that Casey is set up at home and that he supports the plan of getting us out of there ASAP.  Casey's nurse stayed a little late that day since we didn't get home until 7 (she was only scheduled until 6).  Casey was a trooper and did great.  We always joke that in the ER someone always says 'hmmm, I have never seen that before'  We were waiting for it.  Sure enough the ER nurse was not able to find a good vein so she got the charge nurse.  When the charge nurse came in she used something called a wee light that helps to find good veins.  When she put it to Casey's arm she just saw straight through it, no veins at all.  They ended up having to call in the PICC team to place the IV.  They did finally get it, and sent off all her labs while she got some fluids.

All of her labs, xrays, everything looked great.  No one had any clue why she is having so many issues.  We already had appointments scheduled Wednesday and Thursday with her specialists so they sent us home and suggested that any additional tests be ordered out patient during those appointments.

Tuesday was the only day all week that I did not have anything scheduled for Casey.  I decided to take the morning to go check in on my grandpa who had been waiting on me to take him to the bank.  When I picked him up he was not doing great.  After 30 minutes he seemed a lot better so we ran some errands and I took him back home.  That night I got a call from the nurse at his assisted living facility telling me that he fell and hit his head and had been taken to the ER.  When Casey's night nurse came in I called the ER and talked with his nurse.  His nurse called me every few hours to keep me in the loop.  They ended up admitting him for low sodium, but luckily his head was okay.

Wednesday Casey went to see her neuro.  I checked in on my grandpa in the morning then came home to get Casey to her appointment.  The appointment went okay.  Her doctor added a new seizure medication to help with her increased seizures, but she didn't really know why Casey was having so many other issues with breathing and her stomach.  We talked about a few other big picture things, but other than extra help with seizures we still didn't have any answers.

On Thursday Casey's breathing was even worse.  We had to drag the oxygen tanks with us to her appointment with GI in the morning.  He said there was not a physical reason that would cause the carafate to clog in the catheter, but suggested we try a bigger catheter and possibly we got a bad batch of carafate.  He wrote some orders for these things and told us to try them.  If they didn't work to let him know, but hopefully if we can get the carafate into her stomach it will reduce the seizures being triggered by pain/discomfort and if she is not sick to her stomach maybe she will stop wretching and stop pulling so much secretions up.  It was worth a shot.

We went and grabbed lunch then headed to the hospital for physical therapy.  Casey got to see her boyfriend and that seemed to make her feel a lot better.  She really showed off during therapy.  She did great and we were able to take off the oxygen.  She did better and looked better at therapy than she has in weeks.

After therapy she had to see her ENT.  Her ears looked better than they have in a while.  She didn't even have to get them cleaned out.  AND...  they had My Little Pony stickers at checkout.  Her bad morning turned into a pretty good afternoon.

Friday morning she wasn't feeling great, but I promised her some pool time.  The pool seemed to really perk her up.  The new medications we all ready too so I went and picked them up so we could get them started.

Tim came home Saturday and that was the first night in over a week she was able to go with out needing oxygen.  We were finally able to get the carafate into her stomach this weekend too.  Once we got it in, she started to look and act much better almost right away.  We have spent weeks thinking she had pneumonia or something major going on and it ended up being a bad batch of a medication that she needs.  I'm glad that we have answers, and I am even more glad that Tim is back.

I was trying to find time to help with my grandpa who is still in the hospital while also trying to figure out what was going on with Casey and there was simply not enough hours in each day.

My grandpa is having a lot of issues, but his sodium finally looks better as of today and they are moving him to in patient rehab.  Hopefully in a week or 2 he will be strong enough and ready to go back home.  Casey has her pulmonary follow up today and things look good.

Our nurse called out tonight.  Luckily we have day nurses tomorrow and nothing planned out of the house.  The agency we use has a few nurses that are supposed to come out to meet us this week.  If all goes well hopefully we will find someone for our Thursday through Saturday nights soon.  Finding a nurse is just the beginning.  Then we start the training period.  That takes a good week or 3.  Then we go into trial mode.  It usually a few months before we really feel comfortable with a new nurse.  Hopefully we will find a good one this week and get the process started. 

Friday she is getting Botox in her salivary gland.  We tried this  a while back and had no improvement at all.  This time they will be using ultrasound to insure that they inject the gland and not surrounding area.  We should know early next week if it is going to help or not. 

Hopefully things will slow down around here and I will be able to post again soon- and hopefully with better news.  Casey got some new floats for the pool.  I think when Tim is done with work for the day we are going to go check them out.  We'll try to get some pictures of her in the new floats over the next week or so.  We hope everyone is doing well & enjoying their summers so far.