Post Op Update 4

Emma is recovering pretty well.  We have removed one of the chest tubes and a couple of additional lines.  Today we removed the pacing wires which is a good sign because that means her heart has been in a stable rhythm and so they feel like they wont need them from this point on.  We are thankful that they are able to do much of this because with everything they remove means we are one step closer to getting her home.  Yesterday, she was in a pretty crummy mood and she appeared to not feel well.  She has not been sleeping very well since being admitted and definitely not well since post op.  Thankfully, she slept very very well last night and I could tell that made a huge difference today.  She was way more interactive and smiley with Sarah and me and all the staff at Boston Childrens.  Also, her sleeping meant Sarah and I were able to sleep as well, which is never a bad thing! :)

We still have a ways to go before we can come home though.  She is still putting some fluid out of her abdominal drain and we are unsure what is causing it or if it will slow down.  Today, we have taken steps to try and see how much she can reaccumulate on her own without us draining it off.  

We still have a ways to go on diet.  She is still on TPN and lipids, but we have introduced some enteral feeds.  We are praying oh so hard that she will continue to do well with that, be able to tolerate the fat in the feeds, and grow bigger and stronger.  Because we are not where we need to be  at with the feeds, we are leaving one chest tube in and the abdominal drain in as well in case the feeds cause her to put fluid out in those locations.  We also have a lot of tweeking to do on her diuretics to get them just right.

All-in-all though, she is showing great progress.  She stood for the first time today post op.  She did so good with it.  We were all so very proud of her.  We are blessed to see the progress, and blessed to have such a great support system as well as team in Boston and in Dallas who take such great care of her.

Prayer requests:
1) Pray for her diuretic regimen.  That what we and the team come up with work for her.
2) Pray for her ascites, that it continues to improve and eventually stops draining.
3) Pray for her heart.  That it continues to improve after this surgery.
4) Pray for all the team in Boston that is taking care of her.
5) Pray for patience and strength for Sarah and me.
6) Pray for her lungs, that they continue to stay clear.
7) Pray for her feeding, that we figure out something that will work for her long term.
8) Pray for her therapies, that she will continue to progress with those.

As always, we thank each and every one of you for your thoughts and prayers on our behalf.  May God bless each and every one of you the way that He has immensely blessed us!

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

Scott