It has been a while since I have updated the blog and for all those consistent followers, I apologize. It has been busy not only around here but at work, and so now I have some free time to be able to update the blog and share what is currently happening in Sarah, Emma's, and my life. So, as you may remember, we were going to start going through transplant evaluation. Well, we have made it through everything now. We had a lot of meetings with many new physicians and teams of people. The transplant team checks everything to make sure that transplant is what is right for the person being listed. The first consult/meeting that we had was with one of the main physicians and some of his team. He basically just explained to us about what transplant entailed and what to kind of expect as the rest of our evaluation progressed. We met with a psychologist, who I am guessing wanted to just see how we were doing through all of this and possibly assess how she thought we would do if transplant was the road that we would travel. We met with child care services who asked us similar questions as the psychologist, but her services were more tailored towards Emma. We met with neurology who did an assessment to see how Emma was progressing with normal developmental areas for her age. He watched as she followed her purple elephant around in the dark, how she would follow Sarah and her voice around, and various other tests. He said at the end that Emma passed with flying colors!!! And as he was leaving, he waved bye at Emma, and (though probably involuntary) she raised her arm up and waved her hand back at him. He said she was a "show-off!" Hehe! :-) She had a visit from pulmonology who took a look at her lungs. To him, it looked like Emma was just weak and would need more time before she would successfully come off of the ventilator. He said her lungs did not look to have a huge amount of lung damage which was really good news. She also had a gastrointestinal tract test to see if her passage of fluid was obstructed or if anything was abnormal. Everything from that test came back ok, which is good. However, we still don't know why she is having trouble tolerating her feeds. Possibly one of the medications she was on could have been contributing to that, as well as her heart not functioning quite like it should for her GI tract to work as well as it should. They are still looking into this area. So, today, they came in and said that they were going to go ahead and list Emma on the transplant list!!!!!! As many of you probably know, that does not guarantee us a heart right away or anything, so we are going to be working on her main problem at hand right now, and that being the problem of nutrition. Its very important for her to have good nutrition, not only for her health, but also for whatever path we go down, whether transplant or Glenn procedure.
Right now, Sarah is holding her and she is sleeping! Such an amazing site to see!!!! I love them both so much! :-)
So that is what we know right now. We will keep you all updated as we know more. We thank everyone for the kind cards and messages that we have received! As always, I give all the thanks for Emma, the doctors and staff, and all of you, to God! God is good, all the time! And Sarah, Emma, and I truly hope all of you have a Merry Christmas!
Some specific prayer requests:
1) Pray that the path that we are to go on all works out and that Emma continues to improve!
2) Pray for Emma to get good nutrition and keep it!
3) Pray for the doctors and staff here at Childrens. They have many tough decisions ahead. May God guide them in the way that will work best for Emma.
4) Pray for Sarah and me and our families as we continue on this journey.