Finishing 3rd Day At Mayo

Hi family and friends. Thank you so much for all of the encouraging texts and comments and especially all of your prayers. You'll never know how much it means to have you standing in the gap for us!

The above picture is of the supplies that are required to maintain my care. So thankful our apartment in Phoenix has two bedrooms so we can stay organized, especially with all the new supplies for my new feeding and gastric tube. Great news about that ... We started tube feeds last night through the new feeding tube. Monday in surgery they removed the feeding tube that didn't function and was the cause of my 31 day stay in the hospital back at home. The tube seems to be working great. If it continues to work well I will be able to discontinue the IV nutrition that uses my port in my chest. I have felt miserable on the IV nutrition mostly in part because the body is not made to process nutrition that way. Please pray the feeding tube continues to stay in place in the small intestine (the problem before as it would coil up in my stomach and feeding tubes need to stay in the small intestine for the proper nutrition to take place). We started with just a trickle feed of 20mL an hour and can increase by 10mL every 6 hours. I am currently running at 60mL with no problems so far. Max feeding dose through the pump is 125mL per hour.

Yesterday was full of tube education, dietary and nutrition learning, and a MRI Angiogram to check the stability of my aortic aneurysm. Among other things, today we spent more than 2 hours with my lead geneticist. We will be starting the process of doing a complete genomic sequencing of my DNA make up. This capability was not even invented in my arrival at Mayo three years ago. The doctor has recommended me for this study because of the severity of my connective tissue disease. She suspects that I may have other issues going on in combination with my current disease. We feel blessed to be given this opportunity to learn more about my health at the genomic level. Information gained from this study will be instrumental in treating other issues if need be. Other great news from today was our meeting with the cardiologist. My aortic aneurysm has not grown at all in two years! It grew initially in the first year of diagnosis and we were quite concerned about its growth rate which would put me in the various dangerous position of having to have surgery on my aorta. NO Growth in two years! Can we all say, "Thank you Jesus."

So that basically brings you up to speed on the facts - 9 appointments and 1 surgery in 3 days. Read on if you want to hear a little about how I am doing ....

This trip has had a lot of activity and a lot of supplies and learning. I can't even begin to express the blessing it is to have Steve with me for every step. He understands everything I

can't seem to remember or figure out. I am blessed beyond measure. I have always said I would be transparent on this blog and not just pick the good things to talk about. I am thrilled with all that has been accomplished in 3 days. I am also medically exhausted. I think it started in May with my 31 day hospital stay and then 2 more stays totaling 48 days of inpatient hospitalization. I have an exhaustion that sleep doesn't seem to fix. This is a new experience for me. I even find times of nervousness and restlessness when I can't find a reason. I am trusting God to carry me right now because I don't have it in my own strength. Tomorrow I have 5 appointments. Yes, you read that right - 5! I need my prayer warriors more than ever at this time. Two of tomorrow's appointments will be dealing with whether the surgeons feel like they can safely repair the tear in my abdominal wall that resulted from one of the failed feeding tube surgeries back home. I really, really,

really want to have this fixed but I am trying to prepare myself for their answer knowing God knows what is best and that will be conveyed to me.The tear is painful but we have walked the road of pain before when we didn't understand why. We can make it through this again if that is the answer. I covet your specific prayers for tomorrow. It's just a full day and I am starting with an over full heart.

Thank you for hanging in there for another long post. We"ll post when we know more. Thank you in advance for your prayers and notes of encouragement.

Resting in His hand,

Lee (and Steve)

---

Comments

Karen Weiss:

Go you!! It's all such incredibly good news!!! Can't wait to se how much better you will be feeling off the IV! Sending you tons of love. You got this!

Connie Hulse :

Praying that your day tomorrow will be successful and that you find sleep and wake refreshed!

Elizabeth Holmes:

Praying for strength and endurance, for rest, for the doctors and nurses and so much more.

Jill Shelton:

Praying that all your appointments go well and you get news they can repair those abdominal wall muscles. I don't know how you keep and thankful God places you two together as he knew what he was doing and the companionship you would both need of each other to get through each obstacle. Love you both and praying for a good day and Lee you find some inner peace and a source of energy to get by. Hugs from East TN

Rebecca M Doty:

Praying for successful surgery and healing for tear in abdominal wall. Love, Aunt Rebecca Maples Doty

Margaret McPhee:

I am thinking of you everyday. I hope tomorrow is a positive experience for you without expending all your energy. Tom and I are have been living in Seattle since early June while he undergoes treatment at Seattle Cancer Care Alliance. I have watched him go to 3-5 appointments in a day and he's at the clinic everyday. It exhausts us both physically and mentally, so I understand your seeming anxiety at the thought. We wish you the best and are excited that the doctors are developing new treatments for you.

Meredith Hutchins:

Praying for a positive outcome during your upcoming appointments.

Eunice Goodwin:

Brave, tough gal- it's not surprising that you are exhausted!! Praying for continued progress and stability of the feeding tube! Much love and many prayers for you both!

Kelly Anderson:

Praying for you and Steve that the Lord continues to provide and carry you both through all of these challenges. We love you!