Thursday, September 18, 2014

Emma's Medical Update and a Few Pics


It has been an extremely busy month for us with Emma’s 6-month check-ups with every specialist on her team, so I will give you a brief update on all of her appointments. 

Scoliosis: Emma saw her orthopedic doctor today and her scoliosis had improved once again!  Her doctor was very pleased with Emma’s progress and told us to go home and worry about more pertinent aspects of Emma’s healthcare because Emma’s back is stable and is not impacting her pulmonary or cardiac status at this time.  The ortho doc also looked at Emma’s hips to make sure everything was forming properly.  Emma’s hips looked great as well.

Pulmonologist/Allergy Testing: Allergy testing is something Scott and I as well as her pulmonologist have been wanting to do for quite some time; however, we needed to wait until her heart cath/eye surgery was finished before we could proceed.  During the allergy testing, Emma received 72 pokes on her back with various allergens.  We were all expecting some major allergic reactions to certain outdoor allergens (ragweed, etc.) since Emma has had major asthma issues after being in Oklahoma.  However, that would be way too easy.  Emma only had one allergic reaction: Lamb’s Quarters.  Have you heard of Lamb’s Quarters?  So, I ignorantly said “well, that’s interesting because we don’t eat lamb.”  After laughing, the doctor informed me that is was a weed.  Of course, we were baffled yet excited about this news.  We headed to Oklahoma that weekend for the first time as a family since being in pre-cath isolation.  As soon as we crossed back over into Texas (slight exaggeration), Emma started sneezing and having a runny nose.  Within two days, it exacerbated to a full-blown asthma flare.  This resulted in  meds, several days of multiple breathing treatments and a few sleepless nights.  We are still unclear on what is triggering these asthma flares which is super frustrating, but we are pushing forward and trying to still let Emma live and experience life.    

Ophthalmologist: We had a follow-up with her optho and he was very pleased with how her eyes healed.  Her right eye is still the weaker eye, so we are patching the left eye for an hour each day to try to encourage her right eye to work more efficiently.

Cardio: This is the update that I am unsure how exactly to write.  You see, Scott and I are at an impasse with Emma’s cardiac care.  Dallas has taken phenomenal care of our sweet baby since before she was born.  We have known all along that there might be a time in her life that we had to pursue other opinions in order for us to make the best decision possible for Emma.  Well, we have reached that point.  Please know that we there are no hard feelings toward Dallas and they are still Emma’s primary care team.  Her team is being very supportive and caring in this new journey.  We have requested opinions from Boston Children’s and CHOP.  We will hopefully hear something back from the cardiac specialists from these centers in October.  Once we have that information, we will discuss it with our Dallas team and pray for guidance as we make a HUGE decision on the next surgical step for Emma.

Feeding Therapy: While we are waiting on the next step, we have decided that it is time to push Emma in her feeding therapy.  We have had such caring therapists that have worked with Emma for a few years and have aided in her making tremendous progress in all developmental areas.  One area that she continues to struggle in is with liquids.  Emma has no desire to drink, so we have enrolled her in an extensive feeding program through Baylor called: Our Children’s House.  Emma will be enrolled in the day patient program.  Emma will attend this program four days a week for five weeks beginning at the end of October (insurance clearance/waiting list).  Here is a brief description from their website:

On the road to better eating habits, some children require more intense, frequent therapies. In our Day Patient program, your child sleeps at home with you, but is in treatment with us from 9 a.m. to 3:30 p.m. weekdays.  
               Sensory integration therapy for texture, taste and sensory problems
               Oral motor skill therapy for swallowing and/or chewing problems
               Psychological consultation 
               Four to five structured feeding, occupational therapy, speech therapy and psychological consultations each day

We are being cautiously optimistic about this new endeavor.  We are praying that Emma is receptive to this intense therapy and that she is able to make progress with her drinking.
 

Neurologist:
Her neuro appointment was short and sweet.  Emma’s neuro was happy with her progress and said we will just continue to monitor her.


Well, that about wraps up her medical updates.  There is fun stuff to catch you up on, but that will have to wait for another night.

As always, God is good!  All the time!  God is good!


Sarah


Wheelchair Fun at Gramma and Grampa's

Busy with Cousin Coen

Uncle Caleb is so Funny!

Hay bale fun!

Standing like a big girl at the window looking for flying pigs :)

My beautiful heart warrior

She looks like such a big girl in this picture

Wednesday, August 6, 2014

Quick Update

Just wanted to shoot out a quick update.  Emma was stable enough to be moved earlier to C8 which is the step down unit, so to speak, of the CVICU.  She has had all of her IV lines removed and now we are just getting her back to her home regimen of things so we can get discharged.  Not sure at this point when that will happen but hopefully soon.  Everyone, doctors, nurses, etc. have been so great during this hospital stay and we can't thank them enough for all their hard work and dedication!


Now, off to bed for Sarah and me.  Again, thanks everyone for the continued thoughts and prayers!


God is good, all the time.  And all the time, God is good!


-Scott

Emma's first selfie (we did not know she was taking pics) ;)


Cath Update 5

So, long night.  Sarah and I did not get a lot of sleep and neither did Emma.  Emma was just uncomfortable and didn't sleep well.  She also had a lot of stuff going on from the care perspective last night that would wake her up and then in turn, us up.  Overnight, we also had some electrolyte issues which meant some arrhythmia issues.  Nothing severe, but we had to address those as well.  So, like I said, long night with little sleep.  We were greeted this morning, however, by a smile and some laughs.  This was so great for us to see! :) Those though were short lived as she got tired and is now back asleep.  Her cath doctor already came by this morning and said she looked great.  The doctors in the PICU also have rounded and think we are ready to go to the cardiac floor in preparation to go home in the next day or so.  We should be removing the majority of her IV lines today, which no doubt will also make her more comfortable.  We have also started back her water through her NG tube and will get to try and feed her today as well.  We are also weaning down on her oxygen.  She has been on 2L continuous flow and we just went down to 1L.  If she handles that well, then we will keep titrating it down to be on room air for discharge.  All in all, we are so proud of how she is doing and how she is recovering!

 

As always, we thank you for all those that are thinking about us and praying for us!  Simply put, prayers work.  What an amazing God we serve!

 

God is good, all the time.  And all the time, God is good.

 

Some prayer requests:

1) Pray for the upcoming decisions that will need to be made regarding Emma's future surgeries/procedures.

2) Pray that she continues to have a quick recovery.

3) Pray that she tolerates food well as we start feeding her again.

4) A special prayer of thanksgiving for the doctors, nurses, respiratory therapists, etc. that are taking such amazing care of her.

5) Pray that she continues to do well coming down on oxygen.

 

Tuesday, August 5, 2014

Cath Update 4

Emma is settled in the PICU and is finally resting.  She was able to be extubated and seems to be handling that fine.  She is a mad little girl and just wants to be left alone.  Her eyes are slightly bloody and swollen. She doesn't want them open for very long and understandably so.  Our goal is to keep her comfy tonight and let her rest up.

We appreciate all of the love and concern each of you have shown.  

Prayers for a restful evening and good respiratory status.  



Cath Update 3

Emma is done with her cath and stable.  They were working on getting her extubated.  We will be going to the PICU due to crowding in the CVICU.  We are slightly disappointed in this, but one of her CVICU docs is on that floor, so that makes us feel better.  

We received a lot of information and will divulge that info as we process it more.  Things look pretty much the same as they did 2 1/2 years ago.  She has higher pressures (20s) and has developed massive amounts of collaterals that are working in her favor right now.  The Fontan is not in her best interest. 

In the positive, her lungs looked better, her PAs looked good, and her heart is pumping well.  

We will be speaking and consulting several people over the next few weeks to determine the best route for our girl.  

Please pray for a continued smooth recovery and an uneventful few days of recovery.

Pray for wisdom for Scott and I as we make life-changing decisions for her.

Pray for all the doctors consulted that they will be open, honest, and helpful.

God is good!  All the time! 

Cath Update 2


Emma is doing well.  Her eye surgery is complete and the Dr said that it went as well as a non-heart kiddo.  Yay!  

Dr. Nugent will get started on her cath now.  He informed us this morning that unless he found anything major that this would be mainly diagnostic.  Please pray that it goes smoothly and that her recovery is uneventful.

Enjoy some pics from the silly girl this morning:


The happy meds had set in lol 

Monday, August 4, 2014

Cath Update 1


Quick Update:

We are settled in on the 8th floor and waiting on the IV team to put in her IV so her fluids can be administered starting at midnight.  Emma will be first case in the morning.  The opthalmologist will do her eye surgery first then Dr. Nugent will immediately start her cath.  Her eye surgery should start around 8am.  We will do our best to update you as the day goes on tomorrow.  

Specific Prayer Requests:

1. Smooth intubation and anesthesia administration.

2. Eye surgery and heart cath to go smoothly. 

3. Uneventful recovery with easy to manage pain and fluid issues

4. Wisdom for the doctors and medical staff.

As always: God is good!  All the time!  God is good!