Saturday, January 17, 2015

Update 1/17/14

Just a quick update on how Emma is doing.  She is adjusting to having her GJ tube and is doing well with it.  After the surgery, she seemed to be uncomfortable in her belly region, but that has seemed to improve each day which is really good.  She did pack on some weight post surgery, and not nutritional weight, more than likely fluid.  To the tune of around 0.8-0.9kg which translates to 1.8 to 2 lbs.  So we have been keeping a close eye on everything to make sure that doesn't cause any issues.  So far, she is doing well.  We were able to give her an IV dose of Lasix today which helped potentially get some of that fluid off.  The other area we are working on is making sure we have a solid plan nutritionally.  We have successfully worked up to full maintenance feeds through her J portion of her GJ tube.  This will give her some good calories throughout the day.  We also today gave her some food through the G portion of the tube.  So tomorrow the plan is to continue to increase the feeds to get her where she needs to be and see how she does.  She is still not wanting to eat by mouth for us (we think probably behavioral... one of the only things she can control) but we feel confident that when we get her back home into her environment, she will do well with that.  In other news, her xray two days ago appeared to show pneumonia...........  The team here had a low threshold and went ahead and started her on antibiotics.  Her xray today though looked much improved.  So we are not sure if it is pneumonia or not.  But either way, she is getting the care that she needs to take care of the issue.  We are praying she gets over whatever it is soon as it was effecting her oxygen saturations especially at night.  She is still not back to her sassy self after all that she had done, but her mood and energy level seems to be improving each day.

As always, thank you everyone for the thoughts and prayers!

Prayer Requests:
1) That she gets over "pneumonia" or whatever this is quickly.
2) Pray for her fluid status since she gained so much weight and they think it is fluid related.  Pray that she tolerates it well and that we can get the excess fluid off of her.
3) Pray for her nutritional status.  That we develop a plan that works for her and that she tolerates well and can thrive on.
4) Continue to pray for her heart, lungs, and development.
5) Continue to pray for Sarah and me.  That we have the strength for the decisions and journey ahead.

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


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