Monday, September 29, 2014

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.

Sunday, September 14, 2014

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.  

Saturday, September 06, 2014

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!

Friday, August 15, 2014

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 :)

Thursday, August 07, 2014

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.

Tuesday, July 15, 2014

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 :)

Monday, July 14, 2014

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!