Day 1 Post Op Evening

Overall Addison is doing amazing. She is a tough little girl.  This evening they have struggled to keep her blood sugars within the tight range they like which helps to keep the newly transplanted islet cells from trying to work.  It's been a constant back and forth of turning on iv glucose turning it off then again then dextrose bolus etc. This is not uncommon after the surgery just different than earlier today. 

Day 1 Post Op

I can not explain how proud I am of my brave little girl...She's been so strong today...She's been sitting up in a chair 2 times today already...The nurses keep saying how amazing she is...They've started calling her a "rock star"... :) We truly serve an AWESOME GOD! Thank you to everyone who has lifted up a prayer in our behalf...I can tell you first hand, it's working more than you will ever know! The nurses and doctors here are more than I could ask for as well! Addison's been sleeping a lot today. They're trying to find a balance between pain management and keeping her awake and alert. Please keep the prayers going.

Sending ECards.....

For those who would like to send Addison an ECard here is the link.

https://sslforms.fairview.org/ecard/index.asp?campus=umch

Just fill out the form and fill in the room number C3136. They deliver these every weekday. The room number will change when we leave the PICU but that's it for now. Thanks

Update 525am Minnesota time.......

Guess it's movie time lol.  She is obviously very weak and still dozing in and out of sleep but turned on the tv and found herself a movie to watch. :)  Her nurses say she is doing amazing, better than any kid they've had.  Thank you Lord for watching after our beautiful and strong daughter.

Update 230 am Minnesota time......

Extubation a success. Breathing tube out and no longer on ventilator.  She was really fighting the tube in her throat and it is now out! :)  She is breathing perfectly on her own. Thank you Lord for each small step.

Just got to PICU

Update 554 pm Minnesota time....

Surgery is DONE!  We haven't got to see her yet but the doctor just came out and said all closed up and in recovery.  Pancreas looked real bad. He said he could tell she'd been suffering a long time. They were able to get 2500 cells/kg.  Average goal is 3000/kg. We will only know in three months the true diabetes outlook. Some patients have 5000cells/kg viable and still have diabetes and others only have 2000cells/kg and are insulin independent. Results are very patient variable. Thank you all for your love, support and prayers during this trying day. We love you all and are so glad the surgery is over. The next three days are going to be really rough but surgery hurdle cleared.
~April~

Update 315pm Minnesota time.....

Pancreas still out to the lab for cell harvest.  Dr. Chinnokotla came by and said she was still doing fine. He said the pancreas was very damaged and hardened and didn't know how many cells would be viable for harvest. Either way, diabetes or not, she is rid of that horrible organ that has caused her so much pain in her short thirteen years.

Update 1255 pm Minnesota Time......

Just got a call from the OR nurse to update us.  The pancreas is now officially out and on it's way to the lab across town.  This part takes 4-5 hours to dissect and harvest all the healthy islet cells they can.  Now we wait and pray for as many healthy islet cells as possible to help improve her odds of avoiding diabetes.  Thanks for all the prayers that have went up for our daughter and continue to do so please.  Will update this evening after islets are back from lab and the remainder of the surgery is underway.  Love, Thomas,April & Bailey Land

Update 1130 am Minnesota time....

Just got call from OR that it would be about three more hours of getting the organs out and then the pranceas goes across town to the lab for about five hours to harvest viable islet cells then back to here for transplant into Addison's liver. As of now they say Addison is doing very well. 

Surgery Day......

Surgery Day........

Addison just now went back to the OR, it's 8:45 am Minnesota time. We probably won't get to see her till around 10:00 pm. Morning started off good, Addison very calm and at peace. She's been ready for this surgery for a long time. Unfortunately we had a set back in pre op that
disrupted the calm and our nerves. They started preventive Levaquin and after about 10 minutes Addison started having trouble breathing, was coughing and holding her throat. She was having a hard time speaking, her throat was tightening up. I got the nurse and the doctor and they checked a pulse oxygen level which was dropping into the low 80s. They immediately stopped the Levaquin and gave her benadryl and an albuterol breathing treatment. After about 20 minutes her throat was loosening up and coughing was easing. Because of the medication reaction Bailey and Nana didn't get to come see Addison before surgery and her dad and I had to send her off scared. She had been so calm and ready but after having the reaction and trouble breathing she was now very scared and teary and that is how Thomas and I had to leave her. I'm am so heartbroken right now. I can deal with medical stuff, see it everyday, people have reactions, things happen, but the fact that it put her in a state of fear to enter into surgery is difficult to take. Please pray for Addison, the surgeons, nurses, assitants and everyone that is involved with her care. The Great Physician has her under his care but the human mom side of me is struggling.

Fun Day before the serious stuff starts tomorrow. At Mall of America Nickelodeon Universe :)

Today we are having some down time before surgery and recovery begin tomorrow.

We Made It.....

We are finally in Minneapolis! Yeah!  Very tired and everyone is very cranky but getting ready to go to dinner. It's Addison's choice since this is the last solid food she can eat before surgery.  Thankful for traveling grace and safety.

Goodbye

Goodbye North Carolina I'll see  you in 2 months. I'll miss you. 

And We Are Off........

Just got on Interstate 40 in Morganton to make the eighteen hour trek to Minnesota.  We are setting off overwhelmed and with full hearts.  The special prayer over Addison and our family at church this morning blessed us beyond what words can express. The kind words, hugs, cards and monetary gifts given by each of you and the church as a whole will help our family tremendously over the next few months as we are so far from home.  We love all of you and we definitely have the best church family in the world.  Love, Thomas, April, Bailey & Addison.

To Our Work Families. .....Verizon & Grace

Thank you so much for the monetary gifts, cards, calls and words of encouragement.  To have co-workers that treat you like family is a true blessing. To those friends with Verizon Wireless who support Thomas in so many ways..... Thank You!  To those friends with Grace Hospital who support April beyond measure.....Thank You! We love you guys like family and are both so fortunate to have not only jobs we love but co-workers we love.  Please continue to pray for Addison and our family as head out for Minnesota tomorrow.  :)

To Our Families.......

We love you guys to the moon and back.  The things you've done for us not just as of late but over all the years are innumerable.  Thanks for: always being there, for listening, for crying with us, for listening to us about lose it (and yes I know that's not a far trip for me, April), for unspoken expressions, for spoken words of love, for. ...... for just being who you are.  We realize you didn't have a choice in the matter being tied to us by blood or marriage but you've always made the most of it. LOL.  Continue to pray for Addison and us as we head to Minnesota for this life changing surgery.   We are blessed with wonderful families and we love you all!

To Our West Lenoir Church Family. .....

The love and generosity you have bestowed upon our family is beyond words. Nothing we could put into sentences would be sufficient to express our emotions of gratitude.  Thank you for the monetary offerings, the cards and calls but mostly the Christ like love you've given us.  Please continue to pray for us as we head out for Minnesota.  We love each and everyone of you, our brothers and sisters in Christ.

To Our Kings Creek Family.......

Thank you for everything you have done for Addison and our family.   The love, support and generosity you have shown us is beyond measure.  We love and appreciate each of you.   The Team Addison shirts are AWESOME!  They are just "the bomb".(sorry i went 80's on ya lol)  Continue to remember Addison in your prayers as we leave for Minnesota tomorrow.   She is so excited to get this done and be able to come back as a healthy eighth grader in August.  She says her goal for eighth grade is perfect attendance.:)

Bad Luck

Well what else could go wrong yesterday while playing basketball I rolled my ankle and today we went to urgent care and found out it's sprained but at least it's not broken.

Blessed.......

The last few weeks the expression of love and support for our family has been overwhelming.  Whether it has been through calls, cards of encouragement, monetary support, kind words or private prayers, we thank you each and every one!  We love you all and thank our God above for letting each of our paths cross.

Tonight our wonderful Kings Creek School Family put on an awesome dance and gave our family the proceeds.  The fact that family reaches beyond blood and shared DNA has become so real and tangible to us as of late. 

Just saying thank you seems so inadequate, but we thank each and every person who our Heavenly Father has allowed to cross our path with their gifts, whether it be material, prayer, a card or just a word of encouragement. We thank you all from the bottom of our hearts.

Update/Change

Just a quick update about surgery.....  Due to unforeseen circumstances Addison's surgery has been moved up to May 30th.  Guess I better get on with packing.

I miss school

I hate missing school. I miss my friends. I hate pancreatitis!!!! 1 month from today I will never have to worry about it again yayyyyyyy!!!!!!!!!!:D

Home!!!!!:D

I'm finally home from the hospital. I'm still having a lot of pain but that's probably how it's gonna be till surgery.

Headed Home

After a seven day stay Addison is finally getting to go home in a little bit.  She is still requiring pain medication on schedule but hopefully it is such we can manage at home.  We are all drained physically, emotionally and psychologically.  For those who have been fortunate enough not to have to experience sitting by a child's sick bed it's impossible to explain the toll it takes on a family.  I pray we can manage this at home until we are off to Minnesota for a permanent answer to prayer. 

In The Hospital

In the hospital again, feeling like crap. The best thing I can do to keep me from thinking about my pain is marshmallow basketball:P

Day Five. .....

It's day five of this hospital stay and Addison is still having lots of pain.   Her color looks better and she says she feels some better but not able to go home yet.  Continued prayers for pain relief and the ability to return home are greatly appreciated.

Yet Again.....

Was truly praying for a quiet, pain manageable month before Addison's surgery.......... guess it wasn't meant to be.  Addison was admitted to the hospital yesterday afternoon again to help manage her severe abdomen pain and nausea.  She is so strong and tough but her little body is so tired of hurting and having to be fight.  June 10th can't come quick enough!  She actually made it to school this morning for about two hours, first time in a few weeks, but this disease wouldn't allow her to stay. Continued prayers for Addison, Bailey and Micah as our battle against The "P" Word rages on.