Friday, November 21, 2014

Welcome to the Mount!



We said a bittersweet goodbye to our friends at Hopkins today and traveled by ambulance to Mt. Washington.  

Abby was not thrilled with loading onto the ambulance, but she settled down when she realized I really was going with her!

We settled in at The Mount, thanks to my wonderful parents who brought all our stuff over and helped me unpack!  They rock!



Abby has already been seen by her doctor, 3 therapists, 2 child life specialists, and the therapy dog! :)


Fabulous news:  Abby chewed wonderfully for her feeding therapist!!!!  We were all amazed at how well she did. It looked fantastic and SO much better than before!  The new jaw alignment is working for her! 

Later, some Ravens Mega Fans came to visit.  They handed out treats and had cake.  These big, fierce-looking men were so sweet and gentle with the kids!


Abby ate almost an entire piece of cake during the party!!! I was ecstatic! She says that it is a lot easier to swallow now.  Yay!!!!

The Child Life Specialists then had the kids make their own Ravens shirts. In loyalty to our Redskins, Abby decided to use sparkly purple to make her own shirt!  She was 100% the artistic director!


It's been a fun first day, so hopefully they will have more fun things to do this weekend!






Thursday, November 20, 2014

Moving Out!

We will be moving to MWPH tomorrow!  We are ready to be back among friends who know Abby so well.

Abby was able to eat a little applesauce today!  They are being very cautious because they don't want to push her pancreas herself, but they think that tiny amounts every few hours should be okay. She will be enjoying pudding in a little while!  The funny thing is how interested Abby is in eating, which we have never had before!  This could be a good side effect of pancreatitis!

Today was a fun, busy day.  She had OT in the gym, went to the library, walked all the way to the cafeteria and back (a very long walk!), and did a fall craft. I met with lots of doctors, did laundry, worked on insurance issues, and packed stuff up. I think Abby had more fun! :)

So tomorrow, onto the Mount!  One step closer to home!

Wordless Wednesday







Tuesday, November 18, 2014

Where Should We Go?

I'm at RMH tonight to get some sleep for a change!  Abby has been extremely needy and I've been basically running on coffee.  While I hate leaving her (she was bawling!) :(, this is the last night Matt will be able to be there for a while.  It was a good opportunity for me to rest and recharge.

Medically, Abby is doing well today.  Plastics is pleased with how the scars look, so their job is pretty much done.  The peds team is following her very closely.  We usually have multiple visits from them each day, which makes me feel like they really care about her!  Her concerning enzyme levels have decreased slightly, so at least they are heading in the right direction.

The thing we are learning about pancreatitis is that if you try to push someone too fast, you can have another attack.  There's already a good chance that Abby will have future flare-ups of pancreatitis, so we don't want to push her past her limit.  Therefore, every increase will be done very slowly and she will be closely monitored.  They just started TPN (artificial nutrition) this afternoon, and she is getting a tiny amount of pedialyte in her gtube to see how she does.  So far, so good.  They really don't know how long she will be on TPN.  It hopefully won't be more than a few weeks, but it could be longer if she isn't tolerating feeds.  They  have a low threshold right now for stopping anything by gtube if she vomits or has any pain at all.

So since she's going to be on TPN for a while, we will be heading to a rehab facility of some sort until the feeding stuff is straightened out.  We found at today that KKI won't have a bed available this week, so the coordinator is now checking with MWPH (where we have been inpatient several times and where we did our feeding program) to see if we can get in there sooner.  We know that the hospital setting is not the best for Abby, so getting her to a place that is a bit more homey will be good for her all around.  Plus, the therapy here has been less than stellar (very sporadic and not very helpful), so I am anxious to get her in a placement that specializes in rehabilitation.  Either place should meet the needs she has at this point, so I think it will come down to which one could take her quicker.

The good news is that the MRI came back clear, which apparently gave Abby permission to talk!  ;)  She's still only talking on her terms and is very hard to understand, but at least we've got something. Her fine and gross motor skills are better.  She's still got a ways to go before she is back to her baseline, but I definitely feel better about her not having lasting effects from a lack of oxygen.

So, we will do an intensive program to work on the feeding issues (I'm not even sure actual oral eating is even a goal right now, but we'll have to see how well she does switching to gtube feds), as well as work hard on fine and gross motor and speech.  I'm hopefully that if we get a jumpstart and hit everything hard now, we will be somewhat back to baseline when we go home and can pick up where we left off.  Wishful thinking?  Perhaps!

When are we coming home?  NO idea.  I was hoping to be home by Thanksgiving, but I don't think that's a realistic goal.  So now I'll just say that we will be home by Christmas and I'll be happy if it's before then!  Thankfully, our RMH family is here for us and we can stay as long as we need to.

Regardless of where we are on Thanksgiving, we'll be together as a family and thanking God for bringing our Abby back to us!

Monday, November 17, 2014

She's Talking!!!!

Praise God!!!!!  She is talking!!!  She was mad because I wasn't getting in bed with her (a bad habit we have started the last few days...) and she yelled Momma!  I nonchalantly answered and just kept the conversation going.  It worked!  

The tears were flowing tonight!  I told her she scared us so much!  Her sweet reply was, "I won't do that anymore."  What a sweet, wonderful little girl!  I have missed her so much!!!

Sunday, November 16, 2014

Adventure

Abby and I were given permission to go on an adventure around the hospital!  We walked all around, taking our time to look out the windows, talk about colors, and notice various things around the hospital.  Even though she isn't talking right now, I'm trying to give her as much language exposure as I can.  

I wish I could have taken a picture of our set up!  I was pulling the wagon and pushing the IV pole with the same hand in order to keep them close enough to not pull at her IV!  It was quite a workout!

After picking up some dinner, we visited the statue of Jesus in the original part of the hospital.  


We both loved getting out for a while!!  I'm hoping to make it a daily occurrence if I can.  It does us both good!

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!