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