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!  



Thursday, July 3, 2014

So...What's the Hold-up


I have started and stopped this blog so many times it's not even funny. Not that I don't know what to say necessarily, it's just that life has been busy and this is not been at the top of my priority list. Also, to be honest, I am frustrated. I'm ready to have this done for my child and I'm ready for us to get to continue our lives as usual without being in isolation.

So, many of you are probably wondering exactly what happened during the cancellation of Emma's procedures.  Here is a not-so-brief rundown. 

It  was a couple of emotionally and physically draining days. We are still trying to process everything and doing our best to get Emma scheduled as soon as possible for the next attempt at the heart cath and eye surgery.

That Tuesday morning we went to Emmas ophthalmologist for preop.  It was a very short appointment and we had an idea of what would be happening Wednesday morning with her eye surgery. We learned that he would be working on both eyes to work on vertical and horizontal muscle alignment.

We then headed to children's medical center to meet with Dr. Nugent and the heart team. We get there and are taken into the room at that heart clinic to wait to meet with Dr. Nugent. We were told it might be a while because there were some emergencies that had occurred in the Cath Lab.

 Dr. Nugent's PA came in to discuss with us what was going on. He said that due to the number of unforeseen emergencies both in the CVICU and in the Cath Lab he did not know if they were going to be able to make it work for Emma's procedure the next day. We asked to speak to Dr. Nugent and Dr. Lemler before we made any further decisions. Dr. Lemler spoke with us and was not optimistic that it would happen due to everything that was going on. He was very upset that it wasn't going to work but said he had a room for us upstairs on 8 if we needed it.

We waited for quite a long time to meet with Dr. Nugent. When he came into the room I could tell that it probably wasn't going to happen. He told us that he had done everything in his power, but unfortunately due to the abundant amount of emergencies and unforeseen procedures that were occurring in the heart center..... it looked like Emma would need to be bumped.  

He told us that there was a very slim chance of the cath happening in the morning, but if we wanted to, we could spend the night on the 8th floor to be prepared just in case Emma could go to the Cath Lab.

 We decided to go ahead and stay so that we wouldn't miss an opportunity if it occurred. We spent the night on the 8th floor at children's medical center. They were very accommodating and only made Emma wear a pulse ox probe and held off on an IV.  

The following morning Dr. Lemler came by and said that if the case that was going to the Cath Lab right then went well and did not need to go to the CVICU, then Emma would go to the cath lab around 10 o'clock that morning. They were going to call her ophthalmologist and let him know that it looked like it was going to happen and it would just be a few hours later than expected. We were very excited and relieved that we could go ahead and go through with the procedures; however, her ophthalmologist decided that he could not work her into his schedule and refused to do the procedure. We decided that since we worked so hard to do these two procedures together that we would go ahead and wait and try to reschedule. We called his office immediately to see when his next available day would be and we were informed that he no longer wanted to be on Emma's case, no longer would perform surgery on her, and he was referring her out to another ophthalmologist.

GREAT!!! Now we were having to start at square one again. We were angry, frustrated, and overwhelmed.  We were just ready for her to have these procedures done. We have  been trying since March to do these and keep having obstacles in our way so to speak.

We learned that the ophthalmologist that he was referring us to is at children's medical center and our cardiologist knew of him and thought  he would be more flexible with unforeseen issues that arise when dealing with critical cardiac kids. We called to schedule an appointment and were able to get in (with Dr. L's help) at the end of June.  Emma had a very thorough appointment with the team at children's medical center. We were there for almost 4 hours and were only not being seen by a person during the 30 minutes her eyes were dilating. They carefully looked at everything in her eyes and determined something that we have not been told by her former ophthalmologists: one at CMC Dallas and the one in Plano who no longer wants her case....Emma is apparently extremely nearsighted.  We knew she was slightly nearsighted, but not to the degree she actually is.

The new ophthalmologist wanted her fitted for glasses and wanted to see her back this coming Monday, July 7th, in order to get more measurements to better determine if surgery is actually needed at this time. We left the office and immediately went to get her fitted for glasses. Her glasses will hopefully be in on Monday, July 7th as well. We know it will be a fight to get her to wear them since she is not a huge fan of things on her face, but we will work hard with her so that she can see more clearly.  

To be honest with you, we were shocked at this news. You see, Emma has been able to do things that would seem insurmountable with bad eyesight. She can work puzzles put, pegs into a pegboard, navigate her wheelchair successfully around corners all through the house, spot us from across the room, and many more tasks that would seem very difficult with her terrible eyesight. However, we know one thing for sure and that's emma does things her own way. 

You might say that we are also a little...okay, a lot upset that this was not divulged to us in the past. We were not too fond of the first ophthalmologist, so we moved to a new one in the Dallas area that was ranked very high and that we heard good things about.  We trusted this person's judgment based on multiple exams, and agreed that surgery was the right route for Emma.  And yet, we've gone this long without providing her perhaps what she really needs. I felt like a failure. I felt like I let her down. So now the new journey begins, we are hoping and praying that we have a plan on July 7. We stressed the importance to her new ophthalmologist that her heart cath needs to be done very soon, so if  he believes after the second eye exam that surgery would be beneficial for her then we need to do it now.

 Scott and I are immensely exhausted from this back-and-forth game and we're ready to make decisions for these next medical steps for our girl. Please be praying for us as we do our best to get Emma the things that she needs and get her a new eye surgery/cath date as soon as possible. 

As always God is good, all the time, God is good.

Emma and her Daddy the day she was supposed to have surgery/cath in June

Mom...I can help fold laundry :)


Emma and her side-kick

Emma and Grampa....best buds

Cheering on cousin Coen! 

New therapy exercise to help with mouth closure...;)

Loves playing/wearing her AFOs