Halloween 2012

Casey LOVES Halloween.  Each year we get Casey dressed up and deliver goodies to all of her doctors.  She has so much fun.  It's nice to see the doctors for fun reasons as opposed to a patient.  The staff loves getting to see Casey all dressed up.  We have done it enough years now that some of them expect us and look forward to the visit. 

Casey has a lot of doctors to visit.  Each year it seems like the list gets longer.  The deliveries take most of the day.  This year she was wiped out when we got back home.  We planned on taking her to a few houses nearby, but she just wanted to cuddle up with Daddy on the couch instead.  I don't think he minded.

On the Saturday before Halloween Casey got to go to CLU's Day to Play.  This one was at Lakeshore Learning and the kids got to make spooky spider crafts.  She had a lot of fun with her friends. 

Recently Casey got a new medical device.  The is called The Vest.  It's a machine that pumps air into a vest, or wrap in Casey's case) that surrounds the chest.  The air is pumped in in spurts to give the effect of CPT (Chest Precessions).  Previously we would always just tap on Casey's chest, back and sides to try to help break up fluid and crud in her lungs.  The wrap does a much better job than we can, and it covers the entire area.  We were not real sure how she would handle it, but she seems to like it.  Since it makes her chest vibrate she likes to hear her voice while it goes.  It's actually kind of funny. 

Here are some fun photos of Casey from Halloween:

Where to Begin?

I guess I will begin with an apology.  I realize it has been well over a month since our last post.  We try very hard to do at least weekly updates, but sometimes life just gets in the way. 

I think I have already said many times recently that 2012 has been a rough year.  Casey has been having gtube issues (really for the past 3 years) but they have gotten much worse over the past 6-9 months.  In mid-late September her ulcer was bleeding more than usual.  During this time she refluxed some and we are pretty sure she aspirated on it.  With in a couple of days after that episode she started to show signs of pneumonia.  I guess the good thing about her getting pneumonia from time to time is that we can easily identify it now.  We called her doctors and started the treatments and medications right away.

Usually a pneumonia will respond withing 24-48 hours of the antibiotic and Casey will start to look better.  We could not seem to get her over this one no matter what we tried.  We finally got to a point that Casey was sounding worse every day, with no improvements at all.  We took her into the ER on October 2nd.  We knew we were going to be admitted.  We have a machine called a bipap that we can use to help get more air into Casey's lungs when she is sick.  We wanted to use this, but the masks that we have for her was not working and the ones we had available through our providers would not work either.  We even used one from a friend hoping it would help (sadly it did not).  Our hope for being admitted was some stronger antibiotics and a new mask. 

They ran some labs right after we got there and found that in addition to the pneumonia Casey also had RSV.  This is usually associated with preemies and is very scary stuff.  When they said RSV and Casey is 6 I was very confused.  I guess anyone can get it, but it is very serious for preemies because their airways are so tiny.  RSV caused a lot of mucus and you have to clear it out.  Casey was having a really hard time breathing because she was not strong enough to clear out the mucus.  This was making the pneumonia treatments have no effect at all. 

The RT (respiratory therapist) came in pretty quick to get Casey fitted for a new bipap mask.  It took a few tries, and some creative modifications to get one to work.  With Casey's chin being recessed it's hard to keep a seal.  She likes to drop her jaw down and in and this pops that seal every time.  Since she can not close her eyes or blink it make the top of the mask tricky too.  A lot of them have bars that go up the nose and then lay on the forehead.  Casey can't use these.  We also have to have a quick release to get the mask off to suction as needed.  After many tries, Casey did have a mask that worked.

New, stronger antibiotics were started and Casey stayed on bipap for a most of the night.  Once she starts feeling better she starts to fight it.  When Casey fights the bipap you have to open it up and suction a lot.  When you are taking the mask off every few minutes it really is not very effective anymore.  Once she gets to that point we usually end up removing the mask and just putting her on oxygen.

We spent 2 nights in the hospital then came home to finish her recovery.  She was able to get off bipap, but after being home for a few days she had another episode where she could not breath through the mucus.  We had to put her on bipap at home that day for a few hours until she could clear it out.  She ended up staying on oxygen for a few weeks as well.  RSV is some pretty nasty stuff.  I really hope we don't see it again.

During all of this (and before) we have been having a horrible time with Casey's gtube.  It is just getting leakier and leakier every day.  The bleeding went from occasional to frequent to almost daily.  Now that we are finally getting past all of the respiratory issues we are working on trying to get something done about the gtube.

The leaking has made it so that not only is she not getting much of her food, but she is missing a lot of medications as well.  We have seen a lot more seizures over the past year and we are certain it is due to her seizure medications leaking out.  Since you can not be sure how much leaked out, we can't just give her another dose.  She has gotten so thin.  Her weight has only gone down slightly, but she is much longer than she was so she just looks like she is all bones.  The bleeding in her tummy makes her very sick and uncomfortable.  We have a lot more bad days than we used to.  It was time for us to sit down and talk with all of Casey's doctors about the big picture.  How can we make her more comfortable, stronger, and with the least amount of risks?

After talking with surgery many of the options that we would have liked to consider (redoing the gtube, placing a jtube, placing a port) are off the table.  Casey's pigeon chest and complex anatomy make things very complicated.  We have to make the gtube work.  Our only other option is to use a picc line. 

The only way that the ulcer in Casey's stomach is going to recover is to remove the pressure.  We will need to remove the gtube and just cover the site to keep the stomach acids from draining all over the place.  While the gtube is out (weeks or months) we can place a picc line to feed Casey.  Placing the picc will require that we put Casey on a certain type of nutrition called TPN.  TPN has to be adjusted for people to make sure that it is getting them all of the nutrients that their body needs.  When we place the picc line we will have to be in the hospital for 3-5 days while they get everything adjusted.  Casey can then go home with the picc line.  It will require that all of her medications be given through IV.  There will be new equipment that we will need as well.  Some of these things would can get pretty easily, but some of the medications and TPN are a little harder to get at home.  Most likely we will add hospice to our care team to help us access these items.  Used to people only used hospice at the end of life.  For many people this is still the case.  However for complex medical issues (like Casey's) it is not uncommon to move in and out of hospice care. 

Once the ulcer has had time to heal, and Casey has gotten some good nutrition through the picc line the hope is that the gtube will shrink some as well.  We will put a smaller (hopefully, it may not shrink as much as we hope) gtube back in place after weeks or months on the picc.  We will then remove the picc and go back to gtube feeding.  The gtube is still going to be at an angle, and it is reasonable to expect that over time (maybe a long time period, maybe not) the ulcer will likely return and we will have to repeat this process.  Over the coming years we will likely have to be in and out of hospice and off and on TPN.  As long as these help Casey to be more comfortable they are all worth it. 

We have a few more things we are doing with her current gtube site.  Depending on how these last things go will determine if she gets the picc line in the next few weeks, or if it will be sometime in 2013.  There are risks associated with any procedure, but the risks of placing a picc and going TPN is much smaller for Casey than the risks of major surgery. 

On a positive note, Casey had a good Halloween.  I will try to get another post done this weekend with details and pictures of all of her Halloween fun.  We will also post more in the near future when we have a better idea of the time table for placing a picc line.  Until then we hope everyone is doing well.