Update 5/18/15

Just wanted to put out a brief update on what is going on.  Well to start, Emma is stable.  We are doing medical management for her since right now we don't have any options for next steps.  The team here is really pushing to get her back to Dallas for continued care and to transition to home.  We thought this would occur early this week; however, with insurance being as lovely as it is, it is proving to be quite a challenge.  We are awaiting more news on that.  Other than that, we are just trying to maximize all of her medical care to give her the best quality of life possible.  Please continue to keep us in your thoughts and prayers as we try to get all the transport info figured out, and as we get Emma in the best place possible for this to occur.

God is good!  All the time!  God is good!

P.S. Emma has developed a nasty cough that is causing her problems.  Please pray that we can get this remedied soon.  I hate seeing her miserable:(

-Scott

A Day in the Life

My dear friend Sarah has been in Boston for the past week keeping me company and helping me with the day-to-day tasks.  I asked her to do me a favor one day.  I asked Sarah to document what I do in a 24 hour period with Emma in the hospital.  You see, I get asked, rather frequently, what I do to occupy my time in the hospital....so....here is pictorial/brief description of what Emma's day looks like.


12:04am: Beeping medicine pumps.  I hate the beeping pumps. Now Emma is awake and can't get settled.

2:45am: Feeding pump is beeping which wakes Emma up again.

7:30am: Rise and Shine Boston.  Emma is waking up and it is my turn to get ready for the busy day ahead.

8:05am: Sarah arrived with coffee


8:15am: Doctor rounds with around 15 different medical professionals

8:40am: 6 doctors come in room to examine Emma

8:45am: I finally get to drink my coffee ;)


8:46am: Just kidding about the coffee....3 nurses enter room to flush Emma's PD drain and change PICC and PD dressing.

9:07am: Diaper change/weigh diaper


9:13am: Begin administering 11 medications

9:15am: Fondaparinux injection


9:36am: Sarah microwaved my coffee ;)


9:42am: Call from Scott....I updated him on the plans for the day


9:51am: Skype with Grampa


9:53am: Nurse refills formula bag and increases Emma's rate.


9:57am: CODE BROWN: Change clothes and bed dressings.

10:08am: Dr. Marx (cardiologist) stops by for a  visit and to check in

10:14am: Outfit #2 for the day


10:15am: Finally time for my breakfast


10:17am: Have nurse bring in and clean play mat for Emma's


10:30am: Machines start beeping again!


10:37am: Administer IV antibiotic


10:42am: Physical Therapy: AFO (leg brace) lift is too tall, so we will have to get that assessed.  Emma does tummy time for the first time in six months (since her open heart surgeries)

11:20am: Meeting with nurses concerning a red area around Emma's PICC line.


11:35am: ART Cart

12:04pm: Oral care

12:12pm: Vented G-tube found pink feathers....hmmmm
                 Changed diaper
                 Measured abdominal girth

12:19pm: Nutritionist comes in and discusses that Emma is getting decent enough nutrition to turn off the lipids (fats that go straight into the veins)


12:30pm: Moved Emma to treatment room to draw labs, change PICC line dressing, cap change, and turn off lipids

1:13pm: Back in Emma's room


1:20pm: Well deserved naptime for Miss Emma


1:25pm: Make lunch and go to garden for lunch with Sarah


2:40pm: Check on Miss Priss and change into running clothes

3:20pm: Miss Priss wakes up from nap


3:30pm: Child life specialist comes in to play with Emma

3:59pm: Put on AFOs


4:04pm: Nurse came in and administered meds.

4:13: Heart failure doctor visits

4:17pm: Code alarm sounds in another room.  Doctors and nurses leave room in a hurry.  Luckily, it was a false alarm.

4:30pm: Removed TPA from PICC line. Blood draw attempt was successful.

4:36pm: Antibiotic administered 

5:17pm: Line and Cap change for PICC lines

5:35pm: Emma in standing frame.  I work with her on flash cards, block stacking, bubbles, ball throwing, and following directions. 

6:25pm: Get Emma out of stander

6:30pm: Sarah and I eat dinner in the room.

7:14pm: Start bathtime routine.

8:00pm: Get Emma's weight

8:15pm: Breathing treatment 

8:29pm: Skype with Grampa and Gramma

9:00pm: Brush Teeth and administer night time meds

9:05pm: Sing songs, read story, say prayers, bed

10:33pm: I attempt sleep

12:15am: Emma stirs during assessment but goes to sleep without my intervention 

3:12am: Emma wakes up crying..unsure why.  I changed her diaper and vented her g-tube.  She eventually went back to sleep.

So there you have it!  24 hours in the life of Emma in the hospital.  Big thanks to Sarah for taking pics and documenting our day.  

Emma is improving daily.   She is officially off TPN and lipids and getting all of her formula through her g-tube into her stomach.  Emma is off IV diuretics and getting oral diuretics to pull off excess fluid.  

Tomorrow will be a big day because we will shut off one of the meds that helps support her cardiac output.  The hope is that her body/heart can function decently without it. 

One of Emma's other big issues is her PD drain.  Emma is still putting out a decent amount out of her drain each day.  We will need to try clamping it at some point.

Thank you for the continued prayers! We continue on this uncertain journey and try to get Emma back to some sort of normal in the meantime.

God is good!  All the time!  God is good!  

Crossroads

Where do I begin? And how do I adequately describe the crossroads at which we are currently at with Emma's care?  

Emma has always been seen as complicated and complex. I guess you could say that Scott and I have just learned to accept that....embrace it even....and work hard to try to find specialists to understand her unique anatomy and the way she responds to surgery, procedures, and medications.  However, that doesn't make this process any easier. You see, we came to Boston to see the number one doctors in the world in the pediatric cardiology realm.....hoping that Emma wouldn't be quite such an anomaly.  

The team here has work tirelessly to try to improve her cardiac function to give Emma the best chance possible with her current heart. What we have come to realize is that she is even stumping the best of the best.  We hear day after day that the way Emma is responding to surgeries and medications are just so unique and even more so frustrating to the team. 

They care deeply about Emma just as her   Dallas team did and it is extremely frustrating to them that they can't figure out how to improve the cardiac and pulmonary function. I told her cardiologist, here in Boston,  that I felt like we were in a déjà vu nightmare. I said this because several years ago after her Glenn and Cath  we were in the spot where Emma's  body was rejecting the surgery and despite making obvious changes that should have made her heart better, Emma's body is rejecting the surgery again. Not only that, but for some reason her left lung is not getting much blood flow despite her left pulmonary artery and pulmonary veins looking fine.  

So, where does that leave us.  Well, right now Emma is not a surgical or transplant candidate.  Her body has been through a lot over the past several months and there are several issues with her heart and lungs that are no where near being fully sorted out.  Please understand that this in NO WAY means that the team or Scott and I are giving up on Emma.  Everyone is hopeful that her body will recover and her heart will strengthen; however, we are all very realistic that her journey will continue to get harder and our options will come with more risk and less success.  For instance, one of the only surgical options left to consider has only been done to around 20 kids...3 of those being successful.  

In the meantime, Scott and I focus on today. We focus on what we can do medically to bring Emma back to some sort of normalcy.  Basically, getting Em back on feeds, enteral meds, stable kidneys, bone health, development issues, et . 

Please bear with us a navigate these stormy waters.  Decisions Scott and I are making are not always favorable or easy.  Know that we are doing a lot of praying and leaning on our Heavenly Father for support, wisdom, and guidance. 

God is good!  All the time! God is good!