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.