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!

Monday, June 23, 2014

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.

Sunday, June 15, 2014

Father's Day

Casey started to look a little better Monday and even better on Tuesday.  By Wednesday she was doing well enough to meet some of her friends for an arts and crafts play date.  They made crafts for their dads with Father's Day coming up.  Sadly, Tim is not going to be home for Father's Day.  He leaves on Saturday for a week in India.  We decided to do Father's Day Wednesday evening instead.  I think/hope he had a good day.  Casey made him a little decorative stone and we got him some non-princess related towels for the pool.  Although, I do think he looks pretty manly wrapped in the My Little Pony beach towel.

Casey is doing a lot better.  Tim hates to leave town, especially when I don't have our nights covered, but with her feeling better it does help some.  We don't have a nurse on Thursday or Friday night, but luckily we did get Saturday night picked up.  I was able to get a nurse to come in some Saturday morning as well so that I could get some sleep after being up with Casey all night.

Saturday night Casey started to have some respiratory issues again.  Not as bad as the weekend before, but she was needing some oxygen again.  Luckily it was just for a few hours, but something was still not right.  Saturday and Sunday day she was whinny and had a lot of crud out, but she was breathing well on her own.  Both nights she needed some help.  We just kept an eye on her and planned to call her doctor if she was not looking a lot better Monday.

Saturday, June 07, 2014


I made it to Pittsburgh!  It has been a long time since I have gone anywhere and 2 nights away from Casey is the most I have ever done.  This trip is actually pretty exciting for me.  When I merged CLU with MOM a while back I have a business partner now, Anita.  We have talked on the phone and online many times, but I have never actually met her.  She came in from Columbus, Ohio for the conference as well.

Neotech is a company that we have been using since Casey was born.  Our very first picture of Casey taken just hours after her birth has Neotech products in the background.  We use a lot of their products, but the ones we use most are the suction tips.  They have been more than generous over the years as sponsors of MOM.  Anita and I are joining Neotech (Judy & Sara) at their booth for the conference.  We are here to tell families about Neotech products as well as all about MOM.  being able to be at the conference to meet all of the families was great enough, but Neotech really spoiled us.  We got to go out to nice dinners, we had great rooms, and they even paid us for working the booth with them.

On Wednesday evening I talked to Tim.  He said Casey was a bit whiny and had some blood so he and Jodi (her nurse) tried to give her some carafate.  When she refluxes belly blood we usually suction out what we can then put carafate in through a catheter into her stomach.  There were a couple of times before I left that I went to do this and the catheter clogs not letting her get any of the medicine.  I didn't think much of it since she had been having all of the issues with her antibiotics.  Tim told me that he and Jodi were not able to get the meds in either.  They had the catheter clog right up just like I had.  He wasn't too worried though.  Casey was a little whiny, but over all she seemed to be okay.

I had planned on getting home Friday evening/night and then staying up all night with Casey Friday and Saturday since we did not have a nurse scheduled.  While I was in PA one of our nurses told me she could do Saturday.  Another nurse picked up Friday as well.  When I walked in the door though Casey was doing really bad.  The Friday night nurse is pretty new and not able to really help if Casey is not doing well.  I came in and went straight to work trying to get all of the crud out of Casey's airway.  Her heart rate was really high, she was on oxygen and it she looked awful.  I got her cleared out enough where she was able to breath without the oxygen, but her heart rate was still really high.  She seemed to be calming down some so I went and got a little bit of sleep.

On Saturday Casey and I spent the entire day doing breathing treatments, aggressive suctioning and lots of CPT (gently beating on her lungs to break up any crud).  We continued this on Sunday as well.  The crud that was coming out of her is what we usually see with a pneumonia.  I planned to call the doctor Monday morning if I could not get things cleared out before.  Late Sunday afternoon her secretions started to look a lot better.  There was still a ton of them and she was still miserable, but the color was better and her heart rate was finally better.

As much a I needed and appreciated the 2 nights away I think any over nights in my future will have to get me back home in 24 hours or less.  It was a good trip though.  We met some amazing families.  I was so happy to meet Anita as well.  I knew we got along virtually, and I was very happy that we got along great in person too.  Her son is a lot like Casey and she and I rely on each other a lot when we are having challenging days/weeks.