Sounds like a plan. Good job in presenting your position and sticking to your guns!!
Erika she can do it :) She is a fiesty, spunky, beautiful little girl. She beams when she is with her brothers. She deserves the chance of "normalcy" at home, and so do you. She can do it.
Wow. Wow. Wow. Your candor amazes me. You are able to bear your soul to all of us in such a beautiful way and I am so appreciative of that. You are truly an inspiration.
The White family has perservered and perservered and you will continue to fight and perservere. It is very very clear to me that you are NOT giving up the fight. Indeed, your decision exhibits faith, courage and humility at the same time.
I am asking God to bless the most recent surgery and your journey home to Colorado. I will continue to pray for wisdom and healing. May the Holy Spirit guide your entire family through a peaceful transition in this "new" phase of life. And, may Emerson continue to be a miracle!!!!!!!
And I think she can really do it, too! Hope the surgery yesterday pm went well and the doctor is able to make a definitive decision to do the next one Friday or the bladder removal next week. I agree with Dr. M: you are 100% right! Thank you for your post that explained so well the situation.
Just think....home in several weeks. Everyone will be praying for that!
If Eme has surgery tomorrow, hoping all goes well with no surprises.
Thinking of you, Annette W
Erika you never cease to amaze me at how well you write and explain things to us. I too am so pleased you have a clear plan and wanted you to know that my love, thoughts & prayers continue with you guys. Eme is a fighter and she WILL get through this - I'm with you on that one!
You CAN do it, you are DOING it, YOU ARE DOING AN AWSOME JoB!!. Words cannot even express how much respect I have for you. Miss Eme is blessed beyond belief to have you as her mom. You make me strive to be a better mom and appreciate ALL of my blessings no matter how small. Thank you!
It sounds like you have found your direction! So glad you have found a solution that will work for Emerson and the family as well. Everyone certainly needs to think outside the box with Miss Eme, and if anyone can defy the odds she can!
So, why were they trying to save the bladder to start with if you can remove it? Especially if removing it is more commonly done than the creation of a stoma? Glad you made it back to Omaha safely and got a short visit with your family!
Erika
So happy you are back in Omaha, with your familar Dr.'s and nurse's. You are a very strong person to go through what you have went through. Eme is a very special little angel to have a MOM like you. If you ever need a place to get a way for a while, you are welcome to come to our home, we live about 20 minutes from Omaha. We have a nice home we would like to share with you(only if you want). Our prayers are with you and Eme in the coming days. God Bless both of you.
Hello, I am glad you have a light at the end of this tunnel. Eme is lucky to have such a wonderful mom. With the final surgery on the opening, can it close like it did up north? Just asking. I realize removing the bladder is major but seems to be the fix for 2 issues... infection and being able to remove urine in a meaning manner. You both are in my prayers. Keep pushing for what you know is best.
Go Erika ! Good for you for being a tireless advocate for Emerson !!! I think it sound very reasonable for her bladder to be removed, especially if she will never have a normal functioning bladder anyways and with the benefit of removing the source of the colonized infection, it seems to be the best available option. You have done an incredible job of pushing doctors to think outside the box and advocating for unique solutions to seemingly impossible situations. Continued prayers for the whole family.
Wow you really are an amazing mum! and that really is some rock and hard place to be stuck between!
If the dialation all goes to plan is there still be a chance the resistant organism could cause havoc, some way or another? I understand that removing the bladder is major surgery but will it remove the resistant bug from her body completely?
All the best for this admission we are all hoping this is the one that gets you all home to colorado as a family! xx
Erika,
I continue to be amazed at the strength, intelligence, perserverence and determination of you and your beautiful Eme. You are two amazing girls. I continue to pray for Eme every night and will pray even more to see that you girls get home soon to be with all of your wonderful, supportive boys. You are never far from my thoughts. If I could sew anything more than a button on, I would make you a shirt with a big W on it for Wonder Woman! You are amazing. God Bless you and your precious family. Love, Lori
Geez Erika! It all sounds so simple the way you explain it! What a gift. I am sure your brain has been whirring around and around and around on the latest puzzle. Then, stop, plop, and it all sounds so rational when you get it on the blog.
I am praying so hard for your thoughtful (prayerful) plans to proceed without a hitch. That spunky, stubborn daughter of yours will surely do her part to get home to lello and her brothers.
God bless all of you,
Ellen
Emerson White, you are one lucky and very loved little girl. Your Mommy is one courageous and persistent lady who fights a battle for you each and every day. Your family loves you very much and soon you will be united once again. Your virtual friends and family love you, too, sweatheart. Stick with Mommy's plan and everything's gonna be alright!
You're right - no easy answers here, but you know your child and your family best. Being home is a good thing. You guys have been through much more than the ringer.
Question - if you remove her bladder, how will she urinate?
Best of luck with your new plan! You deserve some normalcy.
i added a quick explanation at the bottom of the post :)
Welcome (?) back. I am so happy you both made it here safely and had caring arms to help with the transition.
Your strength, perserverence and ability to advocate for Emerson --- and yourself --- is astounding.
Praying that you both get healing rest and head home asap!
I am sooo glad you made it back safe and sound. What a long drive! I hope you were able to share some good info this morning and surgery goes well. Is it still this afternoon? (Wednesday)
Thanks for letting us know you made it back okay!
Prayers, Annette W
Wow, we're included on Emerson's blog. . .that is a real honor and I feel very complemented. . .thanks very much.
It was truly a joy working with you both. You taught my student nurses and me so much in a few short days that we will take with us forever. Little Eme has been through so much yet seems to sail through it all with flying colors. You have to wonder how she has made it through the transplants, infections,etc,etc,etc and yet keeps smiling and stays full of spunk. Modern medicine has been there for her but even more than that she has been smothered with lots of love, hugs and kisses from her mom/dad/brothers. That truly is the reason she is the little princess that she is with her dancing, bouncing and singing to her princess videos. AND one last thing is that if we were a little busy trying to pass and chart her zillion meds and the video ended, she would let us know very loudly and clearly that a new video needed to be turned on. This let us all join in with her for some more smiles, laughter, singing and bouncing to the music. Yeah little Eme you taught us a lot in a short time.
Lots of hugs and kisses,
Mary, Adam, Nadia and all your Michigan fans