She's Got The Beat
Oh Happy Day!! At 2am Friday morning Mallory's pacemaker was turned off and she is holding her own! Her heart rate and blood pressure is right where they want it to be. Go..Go Mally..Go go , go Mally!!!
Her vent setting has also been turned down again, and the chest tube they put in at the surgery is out. She has even gotten rid of another medication to make her heart work better, and the last medication, Milrinone, is being turned off today (Saturday). She will only have one light on her "christmas tree" blinking and that is her pain medication. :) Mallory is moving her legs and arms and giving Mommy and Daddy's fingers a little squeeze now and again. She still loves to have books read to her and is trying so hard to point at the pictures.
The Cardio team is very happy with the way Mallory's heart is working. Now we just need to continue working on her lungs and get the rest of the goop out. The Respitory people do CPT every four hours. We still call it her "spa treatment". She doesn't mind the pounding on her chest and back and has even slept through a few treatments. Now the suctioning after her spa treatment, she does not like. She tries to bite the tube.
The new attending on the CICU floor is Dr. Alan Doctor. Yes, that is really his name. :) I wonder if anyone has said to him; Dr. Doctor, give me the news.... :) He wants to continue to take things very slow for Mallory and let her tell us how much she is able to take. As he said, Mallory has made a lot of progress and he doesn't want to push to hard.
The plan for Saturday is to continue to turn the vent rate down bit by bit in preperation of getting the ET tube out, get rid of the Milrinone and Foley cath., continue CPT and suctioning to get the goop out, and take a line out of her right groin. That is a big day! I know Mallory will get through it without any problems.
Mallory is scheduled for her first biopsy and heart cath. on Tuesday. I am very nervous about this. The biopsy will tell us if she is rejecting the heart in any way. Just by looking at the numbers and the way she looks I don't think she is rejecting, but then again I'm not the doctor with special machines and years of training. I'm only the Mom who knows her and has read the transplant education book they gave me over and over again! :) We will just wait and see. During the cath they are going to take a little extra time and check out the flow to her lungs and see if there is anything to be concerned with.
Our prayer for today is that Mallory continues to get the junk out of her lungs and continue to turn down the vent settings with ease. We continue to pray for guidence for the Doctors and Nurses involved in her care and strength for Malloory, Scott and myself. We pray blessings on Logan and Madison and pray for our family to be together soon. Blessings to everyone reading this and praying for our little Mallory and the rest of our family.
posted by Mallory @ 9:01 AM
25 Comments:
A real good blog you have in here.
Great news again, keep it coming. I said a little prayer, just for what you asked for and hope every thing keeps working as it should. So happy little Mallory is squeezing your fingers and fighting those tubes. It just shows she is a fighter! We want her to be. Keep the faith.
Renee
Hi Scott and Wendy!
We are so glad that Mallory is improving. We know the road is long, but you are a strong family & will get through it.
Max folds his little hands as we pray for Mallory.
God Bless-
Liz, Troy & Max Soderberg
Yay Mally!!! I saw Logan and Madison at the Nutcracker today with Papa Kenny and Grandma Jan. They were all smiles :) It must have been a y-u-m-m-y breakfast! Logan gave me a big hug and Madi showed us her new ears! Take good care and we'll see you very soon! Love ya girlfriend,
Eva B.
Yay for Mallory! Glad to hear that her "Christmas tree" is down to one light! We do want to keep that one light though-we don't want her to have any pain, she has gone through so much already. And how can you go wrong with a Dr named Dr Doctor?! We pray that Mallory gets more junk out of her lungs so they are free and clear and her breathing can be slow and easy. We will keep her in our prayers and call in extra reinforcements on Tuesday that the biopsies go well and there is no sign of rejection. After all, how could a heart reject a little blue-eyed, Mickey-mouse-loving figher like Mallory?!
Wendy, Scott, Mallory, Logan, and Madison;
We have been checking the website daily to see Mallory's progress. What a little angel!!! Avery, Lindsay and I say a prayer for Mallory everyday and hope that she is out on the floor before we know it. One of the first things I did when we got home on Thursday was put up the picture of the angel in Avery's room. Wouldn't you know it Mallory has been climbing the mountian ever since!!! These two little ones our teaching our families so much about ourselves and the importance of faith in our lives. They truly are miracles...keep up the steady progress!!!
God Bless
The Uhlmeyers
You Go Girl! We are so excited and glad you are taking all these "Big Girl Steps". Way to GO!
Hope you continue to have a great wknd and next few weeks. Mom and Dad have to be so PROUD of you and everyone else is too. Love, Hugs and Prayers.
The Nielsen's
Wayne, Shelly, Austin and Samantha
A Poem For Miss Mallory
Miss Mallory, Miss Mallory,
A miracle from the start.
You're a beautiful little angel,
but you have a broken heart.
Your parents and your family,
They prayed for you each day,
That soon you'd have a healthy heart, to help you on your way.
And then one day, a special gift
Was an answer to that prayer.
From a family who had suffered loss,
But through their grief they shared
The heart that was a perfect match!
From loss came hope anew!
And so began your journey with
the heart they gave to you.
At first it was a challenge,
But you, you are so strong.
And with your parents by your side
Your journey's come along.
With baby steps, sweet baby steps,
The progress you have made.
And with each step, we've thought of you,
And prayed and prayed and prayed!
So keep on taking baby steps,
And soon you're going to see.
That you can laugh and play and run,
At home with your family!!!
And all of us will thank the Lord
For giving you a new start.
For I believe without a doubt,
Love healed your broken heart.
Cheryl
Hi Wendy Scott and Mallory
Love you all. Grandpa Kenny and Grandma Jan are getting along fine with Logan and Madison. We are learning more and more about each other every day.Us grandparents have to learn how to change ourselves because its a big adjustmants for Logan and Madi who miss their mom and dad and Mallory very much but do a very good job of working together. I think we are all doing great.We will be so happy when we can come down and see you. Thanks Grandpa Larry and Grandma Marilyn for going down today and Marilyn for staying. God bless you all. Wendy I did`t do too bad typing did i. Ha Ha
Grandpa Kenny
She DOES have the beat, keep it up oh little strong one!!!
Happy Saturday!!
Take good care -- The Shipps
Thanking God for your progress Mallory! Those baby steps are turning into big girl steps! You are still in our prayers!
Dave, Robyn, Josh, Hillary and John
Scott and Wendy,
It sounds like things have been progressing nicely the past few days, in a positive way.
I don't work with pediatrics but with adults who have had bypass surgery. We tell them that some have a harder time climbing to the top of the mountain, but it makes going down the other side much more of a joy.
It is sounds like you are at the very best place and take comfort in that when doctors tell you their advice. They had dealt with many others and have gained valuable knowlegde through that.
I also know through going through some hard times, that you will look back and not remember the struggles, but all of the people and comfort you have gathered through you experience.
Lots of people our praying for all of you, more than they ever thought possible.
God does answer prayers, maybe not as quickly and not the way we had planned, but in the end it all makes sense. Keep up the strength and faith.
Mary Kreifels
Prayer and positive thinking! Go Mallory! I'll keep praying.
Love, Judy
Great news!! We look so forward to reading all of your updates. (I usually cry. :-)) Thank you for sharing the latest with everyone. Mallory is truly a miracle. We will continue to pray for your whole family.
Thinking of you often.
The Wallmans
What great news! We will continue to keep your family in our prayers. We will prayer extra hard for good test results on Tuesday.
Jason, Ronda, Brendon, Jace Stinson
What a wondeful update. We will continue to pray for Mallory and her entire family. I can only imagine what kind of strength it takes to get through this. God Bless!
Theresa Brown
Mallory,
Everytime I look at your "Make a Wish" picture you simply make me laugh. What a wonderful picture and I can't wait for you to simile at me like that real soon. I can't wait to be able to play peek-a-boo with you. Love you so much. Grandma Jan
What great, great news! Praying for continued improvement for Mallory at the next appointments. I bet your heart does a little jig when she squeezes your fingers and looks at you with those pretty blue eyes. Can't wait to see you all back in town.
Love, Dawn D
we found your blog at work today (syracuse Hospital). I work with Mallory's great aunt Leona and I know her grandma Jan from the fitness center and because she is a quilter. My daughter Sheri had Logan at Open Arms Preschool. So you see ther I have alot of connections to your family. Just want you to know you are in my thoughts and prayers. Helene
Scott,
I had a drink for you today, yesterday and well, I've raised my glass to you in prayer everyday.
P.S. You still owe me some gum!
Hi Everyone,
Sweet baby girl, may you continue to gain more strength with each passing day. Give Mommy and Daddy a extra little squeeze for us. We continue to pray for all of you.
M&M Pork
I saw Logan and Madison this morning with Grandma. They were having a blast. It was great to see them smiling and having fun. Thank you for the updates. We check them when we get up and before our night time prayers. Sending our goodnight prayers your way.
God has blessed the Mueller family! What great news we read about. Wendy & Scott, by the time you get thru this ordeal, you should be close to becoming qualified doctors--you know alot of terminology. We are so thankful that Mallory is improving each day. The prayers of SO MANY people have helped and I know her guardian angel has been working overtime. Can't wait to see your whole family together for an ice cream cone at Jo-Bob's. Stay strong and we will keep praying & thinking of you. Love & Hugs, Bob & Kathy Bruns
Mallory, Oh Happy Day is right!!!!!You keep the beat with Dr. Doctor and you will keep going places little one. Keep up the big little girls steps. We will be praying for the tests results to be where they should be and it will only be up from here. Give Mom & Dad an extra squeeze. That gives them extra strength.
Wendy & Scott, Remain strong and keep your strength up. You are such an inspiration to everyone back home. Before you know you will be on the way home and coming home to Logan and Madison who miss you lots.
Take care,
Thoughts and prayers coming your way.
Rita & Tom Compton
Dear Mallory
You go girl. I am glad you are doing
good. You are the new GO-GO's Girl. You've got the beat.
Special girl!
Anna.K.
P.S. you are in my heart.
I am glad you are doing well.
Love Lily
Hey Wendi thats awsome!! Thats gotta give alittle relief in your life!! Always praying and hoping for the best for you and your family!! We will be thinking of you guys on Tuesday for her biop!! Best of luck to Mallory that day! In our thoughts and prays The Lubben's
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