Lord, I am still in your hands. This is my confidence. I am a child of God. This is my confidence. Lord, you know how I need you. This is my confidence.
Well, as the title says, this past week was one of suffering. It was a battle of intense pain and a strong emotional struggle. It was also one of trust. Trusting that God is good to me even if I don’t understand, I will choose God over earthly comforts.God knew my weak and feeble heart going into this surgery. For days leading up to the surgery, I second-guessed my decision, I second-guessed the hospital I had chosen, I second-guessed almost everything - I even second-guessed whether this was really God’s plan - even as we were driving to the hospital. It was also a week of unexpected grace and joy.
As we were praying in the car in the hospital parking lot, we just fervently asked God to make the spirit of the Lord overwhelmingly present. We asked that His spirit overwhelm the place. We prayed, “God we need your presence, your will be done. Spirit of God fall fresh on us.”
A lot of my second-guessing was because I didn’t understand the surgery completely or know the Interventional Radiologist Doctor who was going to do the surgery. I feared that since I thought it was a “routine” surgery, that everything would be rushed. I wound up in the pre-op surgery suite for almost 3 hours while all of the staff “crossed all the “t”s and “dotted” all the “i”s due to my complicated medical and anesthesia issues. God’s grace was falling fresh on us.
As we were walking down the hallway to the pre-op area, I was grasping “Shared Army Man.” I lightheartedly said, All I need is a camouflaged surgery gown to match Army Man. We were greeted at the pre-op doors by my nurse who walked us to my curtained area. I’m not kidding - on the bed was a camouflaged gown! I laughed out loud. (See picture above) God’s grace was falling fresh on us.
The nurse came back in after I changed into my gown and got all settled into my bed. The very first thing the nurse asked was whether I had been evaluated for MALS. I am being evaluated for MALS on June 30th by one of the top vascular surgeons in the country who treats MALS. Not only does he evaluate for MALS he also is nationally known for treating complex aortic aneurysms. (Which I also have because of my Ehlers-Danlos syndrome.) She went on to say that she was in charge of the pre-op charts the day before and when she saw mine, she requested my case. She goes on to say that her best friend just went through the surgery. (Median arcuate ligament syndrome [MALS] is a condition in which the median arcuate ligament presses too tightly on a major artery that delivers blood to the stomach. This causes painful distention and pain. In EDS patients the connective tissue can be too lax to hold the ligament up off the artery.) She was well-informed about the condition and emphasized the importance of going to a gifted and experienced vascular surgeon. She said “it’s far way but there is nobody better in this field than Dr. Hsu (pronounced “shew”) in Connecticut.” Yes, you might have guessed by now - My June 30th appointment is with Dr. Hsu! My neurosurgeon in NY facilitated this appointment for me to see if my abdominal issues have a relation to MALS. I was at a loss for words; which doesn’t happen often. She left to get some paperwork, and I turned to Steve with tears in my eyes - we are exactly where we are supposed to be right now, in this place. She went with her friend for his surgery and showed me pics of Dr. Hsu, gave us helpful details, and lodging and meal ideas. God’s grace was falling fresh on us.
Next comes in the anesthesiologist and my heart was relieved when I saw him. He has done my last three surgeries and was able to do two of them without general anesthesia using his unique and critical assessment skills. He remembered my case from last year and all the issues. He also remembered Steve was the Fire Chief. This man is incredible and with some consults with the Interventional Radiologist and his team, they figured out a way to avoid general anesthesia requiring intubation for this surgery. It worked obviously. It was great to be in the care of hands I trusted. God’s grace was falling fresh on us.
The surgeon came in and confirmed he had read my records regarding my pharmacogenetics. He had changed medicines from what he usually used for pain and nausea control to ones that would work better with my genetic alterations. He had talked with the hospitalist who would be over my care after I transferred to the floor and passed on the unusual regimen and we had no problems having that set up when I got to my room. God’s grace was falling fresh on us.
I got to the floor several minutes before Steve and my nurse was waiting. My nurse was the same one who had taken care of me after my kidney stone surgery. She remembered me and mentioned Post Hope. She said she had seen the pictures of my blisters on my arm while I was at Mayo. She was so attentive and I received incredible care from her. God’s grace was falling fresh on us.
My recovery has been tough physically and emotionally as I am battling severe abdominal pain, lack of appetite, and adjusting to a rather bulky tubing system with ports and valves connected to the end. I have to attach a drainage bag to the end port several times a day for a length of time to vent the stomach. The tubing has to be flushed with sterile saline at least twice a day. Not every woman’s idea of what looks attractive, but Steve has been an earthly angel throughout this process. From his time as a Critical Care Paramedic, he understood how this whole contraption works and has been lovingly patient as I am still learning everything. This past week when things were so tough, he took over all the bag venting, line flushing, and bandage changes. The Spirit of God is falling fresh on me.
In your presence, Lord there is joy. In your presence Lord, there is light. In your presence Lord, there is hope. In your presence Lord, there is peace. In your presence Lord, there is comfort. In your presence Lord, their is security. In your presence Lord, there is comfort. In your presence Lord, there is purpose. In your presence Lord, there is grace that continues to fall fresh on us.