Sunday, November 16, 2014

Plot Twist

This was just supposed to be a jaw surgery.  Abby would be intubated for 5 days to let the swelling go down, she would wake up, we would deal with pain, and then everything would be fine.  We would go home with our little girl and her fancy new jaw.

PLOT TWIST!  

Abby's neurological concerns are still there.  We have worked with OT and PT, as well as consulted with many doctors, and they all feel that inpatient rehab at Kennedy Krieger is the best placement for her.  Our insurance company has already been trying to say she could get therapy at home, so the doctors are prepared to fight.  All my local friends know that there's nothing comparable to kki anywhere near us!  Neuro came in to do another exam this morning.  While we are seeing some improvements with the spaciness, she is still having a lot of trouble with her arms and trunk control.  She is also still drooling uncontrollably.  Plastics kept telling us it was from the surgery, but now they are changing their tune.  There are certainly still enough concerns to warrant an MRI.  That will be done tomorrow when she is already under anesthesia for her pin removal.  Is is awful that I am almost hoping for something to show up so that we at least have an explanation?  I just want to know why this has happened!

At that time, a picc line will also be placed.  Turns out, she should have had one all along and the peds team doesn't really understand why plastics didn't order one from the start.  Awesome.

We waited to write an update until we had more definite answers to the newest concerns.  On Friday, Abby started having severe, intermittent belly pain.  It escalated overnight and she got sick, so they stopped her feeds and gave nausea medicine.  Things got even worse on Saturday, so blood work was ordered.  It showed an elevation of several enzymes, which pointed to pancreatitis.  Feeds were held altogether, iv fluids were ordered, and they did an ultrasound.  The ultrasound looked fine, so plastics said she was fine.  (Meanwhile, she is still writhing in pain...). 

The peds team disagreed (God bless them!!!) and ordered repeat bloodwork this morning.  The enzymes are significantly more elevated than yesterday, which confirms pancreatitis.  Plastics is still saying she is fine...

*sigh*

As far as I'm concerned, plastics has done their job and now it's the peds team who is in charge.  Unfortunately, she was admitted by plastics, so they are the primary team and everyone answers to them.  The peds team is now discussing Abby with them...  I'd love to be a fly on the wall in that room!  

The big question is what caused the pancreatitis?  It is always caused by something and is rarely seen in kids.  Typically the culprit is gull stones or alcoholism.  There were no gull stones on the ultrasound and we are pretty sure she hasn't been sneaking down to the liquor store after bedtime, so they are miffed.  The peds team is now analyzing all of the meds she has been on for the last week and a half to see if any if those could have caused it.  

Since feeds are out of the question right now and nutrition is always an issue for Abby, the picc line being placed tomorrow will allow her to receive tpn (artificial nutrition) until things settle down.  She will be able to go to kki on tpn, and the feeding team there (world renowned!) will work to get her back to where she needs to be.  

There's still no date as to when we are moving to kki.  It won't happen until she is medically stable and we get approval by insurance.  I'm hoping we will be there by the end of the week, but I'm content being here if necessary.  I'm working with Abby as much as possible and I think it is starting to show a little.  Sadly, literally the ONLY place she had left for an iv was in her foot (confirmed by ultrasound), so it had to be placed there yesterday when the last one blew.  Now she can't walk.  :(

To make matters worse, they were also testing for a nasty infection called c-diff.  Until results came back negative, she was on contact precautions.  That means we couldnt go to the play room or ride around the unit in a wagon.  I was confined to the room and was not allowed to go to the family kitchen for water or to heat up food.  I did sneak down to the cafeteria late last night when no one was looking (shhhh).  Anyonewho came in must wear a gown and gloves, but I was already "contaminated" if she did have it.  Thankfully, I literally JUST got word that it was negative.  Praise God!  It's off to the playroom for us!

So many people have asked about visiting.  We love visitors!  We declined any visitors today because we really thought Abby needed a day to just rest.  Her little body has been through so much and she is currently getting the best nap she has had!  Any other time, we love visitors! (Although we appreciate your flexibility, as she seems to go from one extreme to the other rather quickly!) 

Please know that her doctors have REQUIRED that all visitors have had the flu shot.  It takes 3 weeks to take effect, so you must have had it by the last week in October.  Please don't take offense when We ask you this.,,we are just trying to protect our girl from any more suffering.  If you haven't had the flu shot, the best thing you can do for Abby is pray!  She also loves getting cards in the mail.  Our room is quite decorated with thoughtful messages and I read her all of them!  Our address at rmh is:  

Ronald McDonald House
The leach family
Room 207
635 West Lexington Street 
Baltimore, MD 21021

Thank you for continuing to pray as we deal with what has turned into a bit of a nightmare.  Right now are specific prayer requests are:

*we are approved easily for kki
*Abby's enzymes return to normal and the inflammation of the pancrease subsides
*the c-diff test comes back clear
*all of the doctors get on the same page and work together to get Abby well
*we find an answer for the neurological concerns

This is all so hard.  We are exhausted in every sense of the word, missing being together as a family, and so frustrated by all of the crazy stuff that has happened.  The joy of The Lord is our strength right now.  I don't have any of my own left, that's for sure!


3 comments:

Raelyn said...

Julie....
"While we are seeing some improvements with the spaciness, she is still having a lot of trouble with her arms and trunk control. She is also still drooling uncontrollably. Plastics kept telling us it was from the surgery, but now they are changing their tune. There are certainly still enough concerns to warrant an MRI. That will be done tomorrow when she is already under anesthesia for her pin removal. Is it awful that I am almost hoping for something to show up so that we at least have an explanation? I just want to know why this has happened!" I do not think so!! You need answers, and a certain "diagnosis"--even temporary--will be of great benefit for moving forward. Besides. Truth be told? I want to know what is causing Abby's neurological issues!! ;)
Pancreatitis? Poor Abby.... Poor Mama!! :-(
Love you later, Raelyn

Anonymous said...

Hello,
I went to school w Matt and am currently living in Hampden. I have a 2 1/2 year old son and take him quit frequently to Port Discovery if either of you would like to join us w your son for a little break we'd love the company. Please contact if I can help in any way, I am a pretty good taxi as well. Love and prayers to all of you!
Carrie

Anonymous said...

Sorry didn't leave email carriesilverman@hotmail.com