New Record

Every so often I convince myself I have learned all I need to know to manage Casey's care.  I am always wrong on that one.  Sometimes it is big things I have to learn sometimes small, but I am always learning something new.  She does like to keep us all on our toes.

Over the 7 plus years we have had more than our share of pneumonias.  We have gotten really good at spotting them early on and taking the steps to get ahead of them and avoid hospital stays.  We have a well stocked home (we call it the BICU- Barnes ICU) with all of the tools we need to fight pneumonia and manage Casey's other medical needs.

For a little while now Casey has just been off and we could not figure it out.  Last week we got the diagnosis of pneumonia and we were stumped.  She did not act like she usually does with pneumonia.  Everything seemed so different, but we went with it and have been trying to get her over it since.  The low blood count added some complications, but we thought we were on top of things.

After yesterday's labs we felt fine keeping her home and letting her rest then retest next week.  She had a rough night and was looking pretty bad this morning.  There was some GI blood (not as much as Saturday, but some) and her heart rate was really high again/still.  She just seemed miserable.  After talking with her nurse we decided to go ahead and call her pediatrician.  We knew that would most likely result in a trip to the hospital, but if that's what she needs then that's what we will do.

In order to avoid the ER and make the trip as short as possible we got Casey's palliative team involved as well.  It took a couple of phone calls, but just before lunch they called and had a room for us.  The plan was to come in, get some blood, and then get back out.  They want Casey as far away from the hospital germs as possible.

After we got into her room the palliative doctor came in and was able to put some pieces together for us.  Casey's previous pneumonias have been aspiration pneumonia (infections caused by fluids that she has gotten into her lungs that should not be there- refluxed food, secretions, etc).  This is not an aspiration pneumonia, but something new for us.  This is called Mycoplasma Pneumonia.  One of the symptoms with this type of pneumonia include Hemolytic Anemia.  Another symptom is ear infections, which Casey has now and I did not even mention since she gets them fairly often.  This explains so much.  This is why we were not able to identify it as a pneumonia early on, this is why she has not been able to replenish her blood count, it all makes sense now.  And, I have learned about a new medical issue yet again.

The doctor said that a while back they use to test for this by taking blood and putting it in ice water.  If it had little clusters form it was this type of pneumonia.  Of course, even though that method worked, they now use much more complex testing for diagnosis.  He has seen enough of these over the years to just spot the symptoms right off.

Now that we know what we are dealing with and Casey has gotten some blood, hopefully we can get her over this and just relax for a while.  As much as we really did not want to come to the hospital, if all future visits can go like this I think we are all set.  We were in around lunch and home before 8PM.  It is the shortest hospital stay ever for our little one.  Her vitals all look much better and she is now snuggled up and tucked in for the night in her own bed.

Thanks again for all of the thoughts and prayers.  She is looking much better tonight.  We are looking forward to a nice quiet Thanksgiving weekend at home now.

Update

The past month or so has been all over the place.  Casey will act like she is getting sick, then as soon as we are ready to call the doctor she has a great day.  The great days became less and less and eventually turned into not so bad hours so we did get her checked out.  Last week her doctor ran a bunch of tests and determined that Casey has a pneumonia and that she is very anemic.  A healthy hemoglobin for Casey would be 12-14, and last week Casey was at 8.1.

In April her hemoglobin fell to the low 7's and we had to get a blood transfusion before heading home.  Casey has what is called gastritis.  She has been having issues off an on for a while since her previous gtube started to have so many issues.  while things are better since closing up the site and moving to a jtube, she still has frequent GI bleeds.  The ulcer in her stomach will bleed and make her very uncomfortable.  When it gets bad she can even reflux (throw-up) old blood.  Every so often her body will have a hard time creating enough blood to compensate for this loss, especially when her body is hard at work fighting off a pneumonia or other infections.

We have had Casey on antibiotics and increased respiratory treatments to help the pneumonia.  She is clearing stuff out and slowly but surely we are seeing improvements.  We added iron supplements last week to help with her anemia, but she had a bad day on Saturday with more GI bleeding than usual.

Her doctor had us take her back in for follow-up labs today.  The hospital was prepared to admit her for a blood transfusion if the labs looked bad.  The labs were not great, but the difference was pretty small.  She is now at 7.7.  Being that she is starting to get over the pneumonia, there is a huge risk of her getting very sick if we take her to the hospital right now.  She has a compromised immune system on a good day, and when she is already sick, exposing her to the germs found in hospital (especially this time of year) is very scary.  We are going to keep her home for another week and see if we can get her count up with iron instead.  Hopefully if her body is not having to fight off the pneumonia much longer it will better be equipped to rebuild her hemoglobin count.  We will get her labs checked again next week and go from there.

Hopefully if we can stay home and have a nice quiet week of recovery labs will look much better next week.  We hope everyone has a wonderful Thanksgiving.  We will post updates next week when we do the next round of labs.

Casey is the current cover photo for Mommies of Miracles, and I thought I would share the picture with you all.  An old picture, but one of my favorites...

Thankful

On Facebook it is pretty common to see people post "days of thanks".  Each day from November 1st through Thanksgiving they will post something for which they are thankful.  I like to read these, but I don't usually post them myself.  It's been a rough year for us and I am feeling especially thankful right now so I thought I would do my own "day of thanks" here instead.

I think it goes without question that I am thankful for my beautiful daughter and my amazing husband.  I am truly blessed to have such a wonderful family that fills my heart.  They are my whole world and until them I did not know how completely I really could love someone.

I am thankful for all of our family and friends.  Raising a daughter like Casey requires a lot of help.  We have a support system that keeps us going.  Whether it is someone just picking up the phone when I need to vent, meeting me or Tim for lunch or happy hour when we need a break or picking me up from an appointment so Tim can stay home with Casey when we don't have a nurse.  People being there when we need them means a lot to us.

I am thankful for my other special needs parent friends (that's a mouth full).  They "get me" in ways others try to, but just can't.  Some of these friends I know in person others I know online, but you all hold a very special place in my heart.

I am thankful for our home health nurses.  We have had some that were not so great over the years, but when we find the good ones they make life so much easier.  They love Casey as if she were their own and are there to help out when we need them most.  I can call them when they are not here if I have a question, some come by just to visit, and they have all become like family to us.  Being able to leave our house and know that Casey is safe and in good hands is a huge deal to us and something we will never take for granted.

I am thankful for the top notch team of doctors that care for Casey every day.  I can call or email them day or night and they all make it a priority to get back to me right away.  We jokingly say Casey gets VIP treatment at doctors, but she kind of does.  They get her in without long waits, they call and check up on her, they work together to make sure that she is getting the treatment, supplies, etc that she needs.  They also go to bat with insurance companies to make sure that everything is covered. 

I am thankful for Casey's therapists and teachers.  She has one therapist that she has been working with for years and she is more like an aunt to Casey than her PT.  After moving we got a new set of home therapists and teachers that have so far been really great.  Her new teacher is very patient and modifies her lessons to things that interest Casey.

I am thankful for our DMEs.  Some I have better things to say about than others, but they provide us with the supplies and equipment we need to keep Casey home, healthy and safe.  We have one driver that goes out of his way to make sure Casey is taken care of.  When we change her order, or if they mess something up he will call us before he leaves the shop to make sure that we asked for the change and if not, he finds what's missing and gets it right.  Efforts like his, and the personal touch that some of our DMEs offer brighten our days.

I am thankful for many people for the different roles that they play in our lives.  Aside from people I am also thankful for all of the equipment we use every day that has enabled us to keep Casey at home and well.  I am thankful for the coffee and chocolate that get us through long nights and rough days.  I am thankful for our adapted van that makes traveling with Casey so much easier (on all of us).  I am thankful for Casey's iPad that brings her so much joy, and for My Little Ponies for the same reason.  I am thankful for Tim's tools.  He is so content working in his shop, and he makes some pretty cool stuff too.  I am thankful for the internet.  On days when I can't leave Casey's side (home or in the hospital) it helps me stay connected to the rest of the world. 

I am also thankful for all of you reading this.  There are so many people that follow Casey's journey and keep her in your thoughts and prayers.  Whether I know you or not, I appreciate your kindness and that you keep Casey in your hearts.  If I don't get a chance to post again before next week, I hope everyone has a wonderful Thanksgiving.

Fall is Here

I love this time of year.  The weather cools off a little, but not too much.  You can go outside without melting.  When you get in your car, you don't burn yourself with the metal from the seat belt.  Fall is definitely my favorite season.  Casey really likes this time of year too.  She has been having a rough time with the weather going up and down so much, but she is adjusting and doing okay.

On Halloween Casey made her rounds visiting all of her doctors' offices.  She has been doing this every year for a while now.  It's a special day for her, and one that we look forward to all year.  She gets all dressed up and they get to see her as a visitor instead of a patient.  Her doctors and their staff really look forward to seeing her come by.  We make little goodie bags and deliver them with a little note thanking everyone for all that they do for Casey each year.  They usually have stickers and other fun stuff that she gets to take home in her trick-or-treat bag.

Our new neighborhood had a block party Halloween evening.  We were really excited about going, but Casey had been having a rough few weeks so the trip to the doctors was all she was up for that day.  We tried to get her ready to go to the party and instead we had a full melt down and a very upset little girl.  So I sat with her and Tim handled the trick-or-treat traffic.  He went all out with a spider theme on the house this year.  He did a great job and it was a huge hit with the neighborhood.  Some of the dads and kids in the neighborhood had to come in and check out his set up.  He used our projector and some film on the windows to make it look as though our walls were crawling with big spiders.  It was pretty cool, and much more creative than I could ever come up with.  Hopefully next year we can make it to the party too.  We did get to meet a lot of the neighbors when they came by, so that was nice.


After Halloween my mom and her husband (Cappy and Grandpa John) came in to town so that we could move my grandpa (GP) to a new assisted living facility closer to us.  The move went pretty well.  It was much easier than moving him into assisted living a couple of years ago for sure.  The new place is much bigger and more active.  This week they have a theme week of 'Country Western'.  They invited Casey to come over today while they had miniature ponies visiting.  Casey and GP had a great time.  They had 2 ponies.  The bigger one Casey didn't seem to care much about, but the little one and her hit it off.  The little one came over and laid her head on Casey's lap.  Casey was able to pet the ponies head.  The pony did not want to leave Casey's side.  They had to pull her away.  When we were leaving the building the pony was by the front door.  It came right back to Casey and gave her some more snuggles.  I think it's safe to say Casey made a new friend today.  This girl loves her ponies.

Last week Casey saw GI.  She is up to 37.5 pounds, as of a week ago- probably closer to 38 now.  It took us so long to get some weight on her.  I'm glad she is finally getting some weight, but we have to be careful that it is not too much too fast.  Picking her up and carrying her is getting much harder now too.

Her new teacher and therapists are working out pretty good.  They come to the house a few times a week.  Some days Casey does better than others, but the teacher is really good and patient with her.

We switched nursing agencies in the past couple of weeks as well.  Luckily all of Casey's nurses were able to get on with the new agency so that we did not lose our nurses.  We were having a lot of issues with the scheduler and administration at the previous agency and just could not deal with it any longer.  The change has been pretty good so far.  We are still learning who to call for what, but we're getting there.

As always, we hope everyone is doing well and enjoying this wonderful fall weather.  We will post more soon.