Thursday, August 6, 2015

Finding Our Normal

It has been a few weeks since we've updated the blog so I thought I would give our loyal blog followers a brief update on Miss Emma.  First and foremost, Emma is really enjoying being at home. It does our hearts good to see the joy on her face from doing normal run-of-the-mill activities that she has missed so much in the past seven months.   

Emma has officially started physical therapy, occupational therapy, and speech therapy.  She has thoroughly enjoyed getting to see each of her therapist that she is not been able to see in a long time. She is working very hard for each one of the ladies and they are very impressed with the progress they are already seeing. As we all know, Emma is constantly surprising us with her ability to reach beyond the limits that so many medical professionals put on her early on in life.  

Physical Therapy: 
The physical therapist is working with Emma to increase her stamina post op. She is also working on getting Emma to learn how to do transitions to get herself up and out of bed.  Once her stamina improves for standing. We will begin working with Emma in her kid walk to get her to use to the walker in order to maneuver herself downstairs. Pic of Emma standing at window looking for flying pigs: ��

Occupational Therapy:
The occupational therapist has been working primarily to get Emma to be not so sensitive to certain textures. After all the hospital stays and surgery Emma is having a difficult time handling different textures.  Her sensory issues have progressively worsened;however, we have all been pleasantly surprised with her willingness to try new textures at home.   So, this picture of Emma touching sand is a HUGE deal:

Speech Therapy:
In speech, we are working on teaching Emma how to use an augmentative device on an iPad to help further her communication needs.  We are starting very basic, but she seems to be picking up on how to ask for things that she wants.  You see, Emma has a huge understanding of the world around her, but cannot express her needs...imagine how frustrating that is for her.  We are hoping this will open doors for her in the communication department.  I don't have a picture of her using this, but she is always communicating through signs and drawings.  She drew a picture for her friend Smith. 

Medical Update:
Emma is still struggling quite a bit with fluid balance issues. We are getting labs at least twice a week to monitor her fluid balance. In true Emma fashion, when she looked her best, her numbers were not good. We had to back way off of her diuretics and increase her feeds in order to make her kidneys happier; however, this did not help her abdominal ascites at all. So, here we go again...increase diuretics and check labs on Friday. We know this will be an ongoing battle....but at least we're home.  Her last echo was stable so we continue day at a time.  

Overall, we are loving the process of finding our normal again.  We have found a couple of wonderful nurses who are helping us get back into a routine conducive of our crazy individual schedules.  

God is good!  All the time!  God is good! God's goodness is not dependent on how smooth or fair our lives are.  God is faithful....even during the storms...he is waiting....waiting on us to choose to either turn our backs or trust in his plan.  Scott and I are choosing to trust...even when it is hard.   

Once again, we can't thank you enough for the prayers, cards, encouragement, love, and support you all have shown us in so many ways.

Monday, July 13, 2015

A big catch up: HOME

Wow! It has been a whole month since I have updated the blog. Time flies when you' the hospital.  What to say to get you caught up? Basically, life has been a lot of the same old same all since we arrived from Boston. The biggest issues that we deal with are
 fluid issues, feeding issues, abdominal girth issues, infection issues, electrolyte issues, and cardiac issues. No biggie right?  It would seem like we were getting very close to gearing up to go home when of course there had to be something that prohibited that. This time the culprit at hand was C-Diff.  If you don't know what C-diff is, I encourage you to Google it....or on the other hand,maybe not (ha ha)!  Basically, C-Diff causes a lot of diarrhea that is very contagious.  In a kiddo like Emma who has been on a long-term antibiotic course and is also taking PPI's including Prilosec and Zantac, C-Diff can be very difficult to eliminate. When we started noticing the frequent diarrhea, we also noticed that her abdomen was distended and she seemed very uncomfortable. After the abdominal ultrasound showed minimal fluid, The team decided to send her stool to check for bacteria. At this time, Emma also started having issues tolerating her formula.  It wasn't that she was vomiting, or retching or gagging, but she was so uncomfortable that she would scream, refused to sleep, and was just overall very cranky. The team decided to run Pedialyte only and give her gut a little bit of a rest. At this time they also started an antibiotic to help with the infection. We slowly worked up on her freds and started her back on a more elemental formula to hopefully cause less stress on her G.I. tract.  However, when we got back up to full feeds she started having the same issues again so we are now at three quarters strength feeds throughout the day and night of the elemental formula. However, she was still having frequent loose stools after the first 10 day course of antibiotics, so the team decided to to give her a very long tapered course of antibiotics to fully eliminate the bacteria. 

Since I wrote the above paragraph, (I have started and stopped this post multiple times) Emma has been able to come HOME!!!! Going home looks a little different this time. Going home includes more medications, more tubes, mines, and wires.  None of that really matters though because it means that we can be home for the first time together in close to seven months. Yes, we had a few days at home in February but those were some very miserable days as Emma was very sick and did not feel well.  we are anxious yet excited about this next step in our journey. We know that the likelihood of us returning back to the hospital is very large. We hope and pray they were able to stay Home for a while before we have to enter again.   We are doing our best right now to get settled in at home, restart therapies and nursing, go to weekly cardio appointments, and overall getting our life organized.  

Emma is still in heart failure, she is still dealing with some mild abdominal ascites, and is still being treated for C-diff; however, she is happy, active, and learning more and more every day. Scott and I are truly amazed by her tenacity.  We are truly blessed to be able to be her parents even in the hard times. We continue to ask for your prayers as we walk this journey with her.  we know that God has a plan for her life and we trust in that plan. As always, God is good! All the time! God is good!

Friday, June 5, 2015

Back in Dallas

I apologize again for being delinquent in updating the blog. It has been a busy couple of weeks, so I will do my best to bring everyone up to speed.

Since it was decided that there are not any current surgical options for Emma, we all decided that it would be best for her to be brought back to Dallas so that she can be near family. Emma was medically transported back to Dallas on May 26. Since our arrival back in Dallas, we have been doing our best to get this team caught up on her last couple of months in Boston as well as to continue to manage her medical care.

However, Emma decided to have other plans.  She developed another peritoneal infection, so we had to remove her abdominal drain.  Well, like the vicious cycle it is, Emma is accumulating fluid in her abdomen again.  She had had fevers with this, but continues to act like she feels okay. The unfortunate thing is that we had to pull her abdominal drain due to the infection.  Since then, Emma's abdomen keeps getting bigger and bigger.  She will be getting some sort of drain soon.  We are trying to work all of those details out right now.  The main goals right now are to get her where she can be stable enough to go home.

Please pray that our big meeting next Tuesday goes well and we can develop a plan that works in the best interest of Emma.  

Pray that her respiratory and peritoneal infection will go away.  

God is Good!  All the time!  God is good! Thank you for the continued prayers and support. 

Monday, May 18, 2015

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:(


Monday, May 11, 2015

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 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!  

Saturday, May 2, 2015


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! 

Wednesday, April 29, 2015

Post Cath Update 2

This will be brief....Emma had a rough night and is fighting very low blood pressures despite being on medications that help boost blood pressure.  Emma is also running a fairly high fever that we are having problems bringing down.  Also, Emma's belly has gotten huge...and of course we don't know why.

Today's plan is to take Emma to IR to attempt another PICC line and try to determine why her belly is so big.

Overall, it has been a very frustrating night.  We hate that Emma has taken so many steps backwards.  

Please pray:
1. Blood pressure will stabilize
2. Belly will decrease in size
3. A successful line will be placed

God is good!  We don't always understand the plan, but HE is good!