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.  

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