We're Back!! 😉

Hello faithful blog followers. I want to once again begin by apologizing. I have been more then a little delinquent in keeping up with the blog over the past several months. In part it's been because we've been busy; and also because I'm in a time crunch with my dissertation; and also because we're living life which is something we really didn't get to do for the better of eight months.  

In October, I did sit down and do a brief medical update and a fun birthday post; however, that post got lost after I had spent hours of writing a clever poem about the last five years of Emma's life (I know, save save save) Anyways, I never got back around to finishing or publishing those posts, so today I will do my best to update you on the last several months in a fun post and then do a post about her medical issues.

In September, Emma was asked to be a part of an event called the Portrait Project. This event raises awareness for children fighting big battles. Emma had her picture taken by a professional photographer and unveiled it at an event in Dallas. The event raised money for the cancer center at Children's Health in Dallas. We were honored to be asked to be a part of the event and the portrait that was taken was beautiful.

Emma started the month of October with the bang.  Her PICC line broke and she was admitted to the hospital a few days before her birthday to get a new one placed. The team worked tirelessly to get her out before her birthday party and we arrived home just a few hours before the fun began. Being the big five-year-old girl that she is, Emma is getting to make a lot of decisions. She told me that this year she wanted a monkey and alligator birthday party. While this may seem strange to some, feel free to YouTube "five little monkeys swinging in the tree," and you will see why Emma's favorite song became the theme for her birthday party. Emma was surrounded by family and friends on that day and had a good time despite being sleep deprived and sore from a recent procedure and hospital stay. 

We are so blessed to celebrate another birthday with Emma. I challenge all of my mom friends out there to not be sad about milestones and birthdays. So many of my friends in the heart community would give almost anything to be able to celebrate another milestone or birthday with their little one. For this reason and many many more, we are joyful for each milestone and birthday that we get to experience with our little sunshine.

October brought about many more fun activities as well. We had or annual Mended Little Hearts of Dallas pumpkin patch event. It was an unseasonably warm day, so Emma wasn't quite content with being out for the event in the hot sun.  But it was a great turnout and we enjoyed continuing to support and encourage heart families in the DFW area.

We also took a much-needed family vacation. We took our camper to Lake Texoma for a week.  Gramma and Grampa took their trailer as well and we enjoyed a relaxing vacation in the summer-like temperatures. Grampa, Gramma, and I all got to waterski on a 90 degree October day. We went on boat rides, attempted to go fishing, took walks around the park, watched Max and Gramp play with the remote control boat, had friends come down and play one day, and just enjoyed being together.

Emma also got to choose what she wanted to dress up as for Halloween. She decided she wanted to be a monkey and she wanted Max to be an alligator. Halloween is also daddy's birthday, so we enjoyed celebrating Scott's birthday when he got back from a business trip that day.  Emma really second-guessed her choice of being a monkey because she hated having to wear the head piece.  Check out the hilarious the tips for pictures with these two crazy zoo animals.

November has been pretty busy yet normal for us. I'll detail how our week typically goes. On Monday and Wednesday she sees physical therapy, homebound school, and speech therapy.  On Tuesdays and Thursdays, she has school with mommy and Lorelei and occupational therapy. Fridays are typically an early morning  cardiology appointment to check labs and change her PICC line dressing in cap.

We traveled to Oklahoma for Thanksgiving. We spent some time with my Gerth grandparents and Scott's side of the family. We enjoyed some yummy breakfast made by my MawMaw and delicious lunch made by my mother-in-law and sister-in-law.  It was a short but sweet trip and we loved spending time with family.

So what have Scott and I've been up to? I have been diligently working on my dissertation. I got some news at the beginning of this Fall semester that has really lit a fire under me to get my dissertation done by the end of the spring or beginning of the summer semester.  So, I am spending a lot of my extra time and late nights working on analyzing data and writing my last two chapters. I am also continuing with my volunteer position with Mended Little Hearts to Dallas. This is something that I really enjoy doing.  I've always hoped and prayed that my experience with Emma can make a difference. Speaking of Mended Little Hearts of Dallas, during this time of the year when we're looking to fill our stockings and trees with presents. I come to you and ask that if you're looking for a way to give back to some families that may be spending their Christmas in the hospital consider visiting dallas.mendedlittlehearts.net and donate via PayPal so that we can provide comfort and care items to these families while they're in the hospital.

Scott has been very busy with work. October had him going to Washington DC and Las Vegas. November has seen an increase in nursing home facilities in the state of Texas,  so he has been busy getting those implemented.  Scott has also volunteered as one of our Bible class leaders, co leader for our life group, and  is working with the Thrive campaign at our congregation to help provide food to those in Low socioeconomic locations in McKinney. I am so proud of how hard he works for us and those in the community.

As you can see, we have been a very busy family over the last few months. It is a good busy, it is back to some sort of sense of normal. Don't get me wrong, there is always her heart failure. It affects us on a daily basis. Her body does not have normal stamina, and there are days when she is completely worn out; however, her endurance and will to keep living inspires me daily. Speaking of will, this kid is one hard headed/stubborn little girl. Please don't ask me where she gets it from LOL. Emma has decided that she's just not going to participate in activities. One day she had to go to timeout five times in the period of an hour for not finding five things in her sensory tub. It is not uncommon for this little one to get multiple things taken away from her on a daily basis. I love her fight but she knows better and has to learn how to obey as well.  She keeps us on our toes for sure.  We are looking forward to the holiday season.  We have a lot of fun family activities and mommy school activities planned.  Thank you for continuing to pray for our sweet girl.  We cannot thank you enough for the love and encouragement.  God is good!  All the time!  God is good!

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.   

Therapies:

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 on....one 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.

A big catch up: HOME

Wow! It has been a whole month since I have updated the blog. Time flies when you're.....in 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. 

I

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!

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. 

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!