Time To Catch Up

Time to Catch Up!

Steve's last post had us back at the hotel at Mayo in November for my complete abdominal reconstruction and another attempt at placing the feeding tube into the small intestine and securing it with clips. I am happy to report that it stayed in place about 3 months before we had to go back on the IV nutrition (TPN). This was our longest placement yet. We have just returned from Mayo where I had two surgeries in two days. One to replace and reposition the feeding tube and the second one to place a central line in my chest so I can receive my IV hydration and IV nutrition should the feeding tube dislodge. Maintenance on the feeding tube requires it to be surgically replaced every 6 months because of sticky formula build-up within the line. So Phoenix ... Here we come twice a year! Both surgeries were uneventful and I was even poolside 2 hours after surgery.

I need to go back and explain why we had to have a central catheter placed on this trip because up to now I have had a port in my chest under the skin that allowed for all of the IV medications and nutrition. In February I contracted a serious infection in the port that had also traveled into my bloodstream. The Infectious Disease doctor believed it was due to a contaminated batch of the blood thinner heparin. I have to inject the line with heparin daily to prevent clots from forming.

Steve got me to the ER and dropped me off (still not allowing visitors - ugh!) and I was in emergency surgery within the hour. The pocket within the chest wall that held the port was full of infection so the surgeon had to leave the hole open and stuff the opening with 4x4 gauze pads. (Yes it was that big!) Thankfully it has healed well thanks to Steve's superb care of the tedious task of repacking the wound every evening. It is now covered with a band-aid!

No port meant no means to access my venous system to infuse my hydration and nutrition when the tube fails. We chose to have a temporary central line placed in my upper arm (PICC line) to buy us time to get to Mayo where we have a much higher degree of confidence and there is better understanding of complications that can arise from my Ehlers-Danlos disease.

I buried the lead in this update so let me backtrack a little ... The morning they rushed me into surgery to remove the port, I met with the anesthesiologist for about 2 minutes. He was not listening to my concerns of neck positioning being very important because of my skull to C3 fusion which prevents my neck from extending back too far. If it is extended back too far it bends at C4-C7. These aren't anatomically made to bend back. Everyone was in a rush and I could tell I wasn't being heard. In the operating room I

asked for an additional pillow because my neck was not comfortable. Next thing I am waking up in recovery with mind-bending pain and a searing pain down my neck and right arm. No feeling in two of my fingers and my grip strength greatly diminished. It was obvious that something had gone wrong in surgery. I even thought maybe they had dislocated my shoulder when transferring me from one bed to another. All I could do was cry. I just wanted out of that hospital and be home with my beloved husband who would also be able to take better care of me. At home there was a lot of care required from IV antibiotics, infusions, feeding, wound care, and on top of all of that there was the searing neck and arm pain that left me in constant tears. I found myself persevering to just make it in 15 minute intervals until that added up to an hour and then eventually a day. Over a week of this. We were both exhausted. We were in desperate need of help to manage all that was going on. It was time for mom to come out from TN. Words cannot describe what a blessing she was! She missed her calling as a nurse and Uber driver getting me to all my appointments. We were also blessed by friends who brought Steve and mom meals. We were also blessed by a friend skilled in medical massage who made several trips to the house.

I got an MRI of my neck and it seems to reveal at least some of the problem. I have 3 large herniated discs below the fusion I already have. It appears the anesthesiologist dismissed my pleas to not try to hyperextend my neck to establish the airway for the surgery. Yes, I am frustrated. At four weeks out now, the pain is easing up some but no improvement in the hand. We are going to have some big decisions to make as Ehlers-Danlos can complicate even simple procedures. It was too short notice to get into neurosurgery this trip to Mayo but I am getting in with a recommended local neurosurgeon to hear her thoughts. My neurosurgeon who did my previous surgeries is in New York. Pray for us to have wisdom and know what next steps to take.

It's been a really tough few months for both Steve and me and we aren't the best at reaching out to ask for help, so for all of you who just jumped in anyway - thank you!

I want to close with a poem I wrote during a time wracked with pain and my body longing for relief and my soul for rest. The poem is an outflow of my heart trying to wrestle with gaining a proper perspective on pain. I pray it will bless you and bring you hope for the situations you are facing that seem "larger than life and unbearable". May it have special meaning as the Easter holiday approaches.

Gethsemane

We wake with dread to face the day

Fearful of what life will cast our way

Day after day our woes appear to increase

We beg,"Just one less problem please."

Our bodies say, "Too much, this heavy burden on me."

How quickly we forget the dilemma at Gethsemane.

We consume our time asking "why" and to whine

To plead how unfair is this life of mine

We dream of living in carefree days

Seeking a higher plan is not of our ways

When we pray, "Take this cup from me"

We have missed the meaning of Gethsemane.

We must decide to seek God's plan

Trust in His wisdom and grasp His hand

Instead of frustration, search for divine insight.

Pursue a learning that comes not from our might

To plead "Thy will be done while on bended knee

Is to understand what happened at Gethsemane.

-Lee Brooks

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Comments

Barbara Sovde:

Lee and Steve...thank you for posting and updating us. I am so grateful to know you are okay-ish and that your faith is so strong. You are both such a blessing to me and to those who are following your trials. Stay strong. You have lots and lots of people who care and are praying.

Steve and Lee Brooks:

Dear Barbara, Thank you for the encouraging post to keep me persevering in faith. Thank you for your prayers!

Steve and Lee Brooks:

Thank you Jennifer! I needed your words today to refocus my mind and see purpose in a project weighing down on me. Love!

Steve and Lee Brooks:

Thank you for your prayers Aunt Becky! Much love to you even though we are separated by many miles.

Steve and Lee Brooks:

Dearest Jill, thank you for all the beautifully encouraging posts you leave on the site. Please share the poem with anyone it might encourage. If I can ever be of help with information about EDS for your friend, just let me know. Love you friend!

Steve and Lee Brooks:

Please share with anyone that might receive encouragement from it!

Jane Levin:

Precious friends, we continue to lift you up to the Lord and "speak the name of Jesus over you", as the beautiful song says. You give us all courage to face our own trials. You encourage us!! Thank you for continuing to let us see into your story. We send you love.

Kelly Anderson:

Always praying for you both and am thankful for the update. God is using you mightily to shine His light and mercy in all circumstances. I am blessed by your life's testimony. Love you friends 🙏

Sandy Temple:

You continue to amaze and inspire me. I am always encouraged by your words to keep my eyes on Jesus no matter what I face...and to say "Thy will be done." I continue to pray for your health to be restored, and for strength and courage, comfort and peace for you and Steve always. Thank you for your love and friendship. Much love....

sandra henry:

Lee, you and Steve continue to amaze me with your strong faith despite all the trials you have been through. I am angry that the anesthesiologist didn't listen to you and has caused you so much pain. Thankful that you have Steve, your mom, and good friends and doctors to help you. Your poem is beautiful and humbles me. I pray that as Easter approaches you will find healing and renewed strength. Sending love from Tennessee.

James Broman:

What beautiful (meaningful) poem)! I shall keep it with me... especially as we approach Holy Week.

Jill Shelton:

Lee and Steve, you all have been through so much and always faithfully, continue to praise Him in the storms. Thanks for always being an Godly example. Prayers as you continue to battle daily. Lee, may I share your poem, it is beautiful and I have another friend who has Ehlers Danlos who is also struggling.

Rebecca M Doty:

I would like to share your poem with my Life Group at church. May I have your permission to do so?

Rebecca M Doty:

I am happy your mom is there to help. I hope your doctor's will soon find relief for your neck, shoulder, and hand. It is an absolutely beautiful poem. Love from your Aunt Becky Maples Doty

Meredith Hutchins:

If you would let me know when you need help, I can cook, shop and run errands. Hugs to both of you.

Jennifer Keller:

Lee, to read all that you have been through (and just recently, not even considering everything before now!), and then to read your beautiful poem. I don't know if you realize it, but you minister to others through the way you always point back to Jesus and the need to trust the Lord. I, for one, needed this reminder today. Thank you for sharing your heart so beautifully!

Mark Colavecchio:

Every time I hear just about any part of your story, Lee, it causes me to reflect and consider my own

'whinings'. This in turn causes me to slow and ask for forgiveness yet again. Thank you for your very unique perspective on God's sovereignty, grace, and joy that He offers in the midst of pain.

You are truly "tried" and found glorifying God in the process. Thank you for your honest, heartfelt responses to a broken world and body. I'm closer to Christ because of your reflections. Blessings, my sister.