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!
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| Trying something new! Tummy time on Daddy's chest! |
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| My Beautiful Little Fighter! |
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| Happy Valentine's Day! |
Sarah (Emma's Mommy)
Sweet sweet baby, we are continuing to pray for you and this long journey. I know God and his angels are always watching over you and your mommy and daddy. He is there every second of the day clearing the path for you. You are getting so big and so very pretty, those bow's your mommy puts in your hair just make you even more beautiful.
ReplyDeleteKeep up the good work growing sweet pea.
We continue to pray for your precious Emma. Kendall and Darla
ReplyDeleteI just have to tell you two that you are wonderful parents ... from the look on my granddaughter's face, she knows that! She is such a pretty little girl, and she's going to be blonde-haired yet! So glad to know that she is feeling better; poor little thing has had a rough week, which means you both have too.
ReplyDeleteHere's hoping the weekend brings some calm and serenity to that hospital room, and that you 3 get some rest! (Tell Froglegs that I loved that frog on little Tadpole's bow!)
Hugs and love to all three of you from Nana!
LOVE the pictures! Emma is such a sweetheart!
ReplyDeleteGlad to hear the update. I continue to pray for you all, especially Emma.
Joy/Chandler, OK
Keeping you in our daily prayers...Praying God will show Himself to you daily and in mighty ways.
ReplyDeleteAngie-Ada
I just want to offer some words of encouragement.
ReplyDeleteNever has a child been more loved than this one! God knew He could count on you two to do the very best for this very special child of His. He has entrusted her into your care and you are doing a wonderful job. Unfortunately, that doesn't always mean you can keep away pain or discomfort or fix what is wrong. Rest in God's strength and peace. You know He has a plan.
Prayers continue for Miss Emma and for you, Scott and Sarah.
Joy/Chandler, OK
Keeping you in my prayers!
ReplyDeleteO my word! What a small small world :) I am so excited to have run across your article on the KXII website, as i live in Howe (just south of sherman) so it was totally a devine appointment. I know you do not know me but several months ago i met you two in the elevator at Children's when i was leaving from a volunteer training class. I came back the next week and was hoping like heck that i would 'conveniently' run into you again to ask about your sweet Emma. It was then that i realized there was no way that i could volunteer without making it 'personal' which is one of the required things in regards to being a volunteer, which is TOTALLY understandable and i am grateful they have that in place. But, personally, it's just not in my make-up. I mentioned something about hoping to see y'all again and someone said "remember, keep it professional" so i just haven't been back and have decided to minister to the families there in a different realm. I know it sounds crazy but i am so relational that i knew that God had someone else planned to fill that position. You two are amazing parents and little Emma is so lucky to call you mommy and daddy :) Just as you are lucky to have been chosen to be the earthly parents that God entrusted her to. What a privilege! Isn't it crazy that some random lady named Robin approached you asking about your baby in an elevator and now that same crazy lady is commenting on your blog! Wow :) Sometimes (ok, many many times) God just blows my mind with His orchestration of life happenings. I am definitely going to be visiting your blog and will be praying for sweet Emma and every medical staff that has any sort of connection to her, all knowing that i am talking to the creator of the universe and He hears my prayers! Take care and keep ur chin up, He's got something huge planned for you all!!!
ReplyDeleteRobin Speed