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!