Yesterday, we met with several doctors, NPs, nurses, etc. They updated us on what was discussed at the surgical conference in coordination with Emma's future care! So, here is what we know. After the last cath, they believe that it would be in Emma's best interest to go transplant route still. The doctors believe that Emma would be an EXTREMELY high risk Glenn and would more than likely end badly! They still believe that transplant would be a good thing for her! They performed a rectal biopsy this week to check for Hirschsprung's disease. Scott and I, along with her nurses did not feel as she had this, but some of the doctors were concerned, so we did the biopsy. Bless my daughter's heart, the biopsy went great, but Emma is on blood thinners so afterwards she bled, and bled, and bled. In the end, Emma does NOT have Hirschsprung's which is good because this would make it hard to stay on the transplant list. Emma is not really showing signs of MRSA infection anymore, so she should be listed 1A again on Monday! Emma is back to doing sprints on the vent and our hope is that she can try to be extubated sometime next week.
Future plans include taking Emma back to the Cath lab in about a month to do a little more work to try to help make her lungs optimal. What we found out from the previous Cath is that Emma was basically working with one lung due to the pulmonary artery stenosis.
Emma is constantly beating the odds and defying statistics. Please continue to pray for Emma as this road, the road of transplant is not an easy one. Emma will be going into this journey with some obstacles stacked against her. But, we know that our GOD is BIGGER than all of this!
On another note, Scott and I have a few words to share with so many of you who have given of your time and resources to help us out recently.....
Scott, Emma, and I would first like to thank all of you for taking time out of your busy schedules to attend the recent events (auction, basketball games, dinners, penny drives, bracelet sales, etc.). It means so much to us to see all of the love towards our family during this time of our lives. Emma's medical journey has been one with many twists and turns, ups and downs, but through it all, we have had amazing support from many wonderful people---like all of you. We cannot begin to put into words how much all of this truly means to us. For all of you that donated items, coordinated the events, attended the events, bid on auction items, collected change, and bought bracelets we are sincerely thankful. A special thank you to the people at Citizen's Bank, Cheryl Yott (for donating Tin Man), Renee Nail, Lea Ann Pettigrew, Latta Public Schools, Ada Public Schools, Jake Scroggins, Leslie Click, and Karen Huddleston. Again we are so very humbled and thankful to all of you for everything you are doing. You all are blessings in our lives and we look forward to the day when we can show our blessing, Emma, to you. God Bless!
|Trying something new! Tummy time on Daddy's chest!|
|My Beautiful Little Fighter!|
|Happy Valentine's Day!|
Sarah (Emma's Mommy)