We are at Mayo Hospital in Phoenix

First I want to say hi to all of our followers on this blog. It has been many months since I posted. I want to thank my beloved and best friend for carrying the load of posting over

the the last many many months. I never dreamed I would be so sick that I couldn't write and reflect. Steve has valiantly stood in the gap for our family and kept you up to date. I love you babe!

A few posts ago Steve shared the great news that our team of physicians acted fast and got us here this week with a full schedule to evaluate all that seems like has been falling apart. Since the first of May to now, I have spent 48 days hospitalized at home in Lacey, WA. This has been the darkest season in this long journey of dealing with my connective tissue disease. Over half of those days were spent without Steve or any visitors because of COVID mandates. The amount of tubes, IV ports, gastric drainage, central IV lines, etc. left me struggling emotionally on many days. I know it was the prayers of you and those you shared with that got me through those really dark times.

As Steve mentioned in the the last couple of posts, we took on a major life change and moved across town to a home being vacated by some very good friends from church. I am pleased to announce that although I had a two week hiccup with a hospital stay, my revised life-size schedule proved to get things done and we left for Mayo with all inside boxes unpacked! Still have some work to get the home gym completed and Steve is still organizing his garage with great progress! We look forward to hosting new community group bible studies and of course the annual Christmas Cocoa Bar Party! Last year we had 84 people over three nights! I am looking forward to just one night this year!

So, I think I have brought you up to speed to the Mayo Clinic. Yesterday I met with a surgeon to discuss plans to address my failed feeding tube. I currently have this tube protruding from my left abdomen and I have to wear an ostomy bag around it to collect bile that runs out around the tube. I went in yesterday with a tube that runs out of my stomach and connects to another bag and allows for decompression and clearing of all stomach liquid contents. I very seldom eat anything by mouth and I get my nutrition from an IV solution that connects to the port implanted in my chest. I get IV hydration through the same port. That's how we arrived at Mayo yesterday .....

Now the miracle.....we started with a surgical consult to evaluate the failed feeding tube. In the process of placing the feeding tube in WA they cut through abdominal muscles creating a large abdominal hernia. The surgeon here is still evaluating whether this

can be repaired because stitching mesh to faulty connective tissue may make the situation worse. I was very disappointed with this news. Please pray we can find a solution to the abdominal tear. After the surgery consult we headed to the Infusion Center to get my port changed. Staff was super nice and competent. They also drew labs and those posted to my patient portal within 15 minutes! We then went through a drive through COVID testing site and then off to the hospital for surgery to revise the feeding tube and gastric tube.

Currently they took up the majority of my abdomen. After a 2 hour surgery, I am now the proud owner of a quarter-size device that has replaced all of the bulky apparatus I have been living with. I am thrilled!! The whole day's worth of appointments was done by 3pm. The professionalism, compassion, and care at the Mayo Clinic restores my faith in the medical system. Patient care and excellent medical care can still be done!

Thought I would explain the pictures above: (1) Steve is an expert at changing out IV bags at 32,000 feet on an airplane (2 and 3) We traveled with over 20 lbs of IV solutions that had to stay cold plus a whole separate suitcase of medical supplies. TSA was great to wok with and we had no problems and (4) Army man made the trip of course. For those of you who have followed our blog, you know about Shared Army Man.

Today is a full day with tube education, meeting with the dietician, and getting a MRI Angiogram to get a closer look and measurements of my aortic aneurysm.

We know it is only in God's strength and provision that we are here receiving first-class medical care. Thank you for following along and hanging in there through this long post. We cherish each of you! Please keep us in your prayers this week.

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Comments

Rebecca M Doty:

I'm so glad that you are at the Mayo clinic. I pray that God will give the doctors wisdom to bring you comfort. God bless you both and continue to provide you peace and strength. Love, Aunt Rebecca Doty.

Barbara Sovde:

Wow. Brought tears to my eyes. Thank you for posting with such honesty and courage. Prayers continue for both of you.

James Broman:

Praying for the presence of the Holy Spirit to encourage, comfort, direct and protect through this never ending journey of faith. Blessings and peace!

Karren Logan:

Your faith is an example for all of us. I must tell both of, you are truly an inspiration. God Bless you and give you strength. Sending much love and prayers.

Elizabeth Holmes:

Continued prayers through this journey. How do people do it without God?

Steve Braden:

Praise the Lord for the "quarter-size" devise. I know that was a prayer answered. Praying for answers on the hernia and MRI. We love you guys

sandra henry:

Thanks be to God for sending you to Mayo and finally getting some answers and relief from your struggles. You and Steve are quite a team. Continued prayers that you will improve each day. Sending love from Tennessee via Wisconsin where we're camping!