Waiting Some More . . .

And so we wait ... some more ...

At least we get to wait at home.

After doing rounds with all the docs responsible for my latest care in the hospital, we came to the conclusion that Steve and I could continue the care I need at home. The hospital setting this trip was less than desirable. After almost a week, they still did not have a room vacancy on a regular floor. I was being shuffled around from a curtain cubicle to a different curtain cubicle about every 24 hours. There was barely room for one visitor to sit. The lights were always on bright and there seemed to be a “rudeness” competition on whose television could play the loudest. The area is officially used as a post -op holding area. The experience left me grateful for all of the private rooms I have had over the years. A true blessing was that despite the chaotic environment, I had the same 12 hour day shift nurse each day. She was amazing and always ahead of my medication schedule. We had some wonderfully beautiful conversations about life and life’s purpose. Obviously as a nurse, she deals with a lot of suffering and we had some great discussions about the larger view of suffering and about the juxtaposition of waiting and gratitude and also the heartache that is part of being ill. So, although the setting was less than desired there was purpose in my location.

Unfortunately we still don’t have solid answers on the cause of the red rash and blisters. The progression did stop just short of my elbow after starting the IV antibiotics and IV steroids and has not moved any further up my arm. A new rash and blister started on my right hand on the finger and knuckle. It has not progressed further thankfully. So far no infection like staph or MRSA has grown in the cultures taken so the docs are leaning toward either a medication reaction (maybe my new seizure medication) or the possibility of progression of my underlying diseases. (The Ehlers-Danlos and Mast Cell Activation Disease can both have skin symptoms and could be made worse by the medication interactions.) The docs stopped the antibiotics since we are fairly sure infection is not the culprit to try and keep from causing too much depletion of the good bacteria in my gut. I am remaining on a “taper-down” period of the steroids. They chose to leave my IV central/PICC line in place for now in case I need immediate treatment. My venous system has become almost impossible to get an IV line started. We will have home health infusion services help us maintain the line at home.

I’ll be following up outpatient with my primary care doctor and the infectious disease specialist coordinating my care. My new infectious disease specialist is amazing, caring, and very intelligent and took great time in getting to understand my complex medical history. We are so thankful to add such an excellent doctor to “the team”! Next steps will be to taper off selected meds one at a time and watch for reactions. The hard part is tapering off the seizure medication because it could allow for breakthrough seizures until we can get on a therapeutic dose of a new seizure medication. And that medication may not be the problem. It will be a time of trial and error period of time . . . And waiting . . .

Some great news is that the nasogastric tube that was placed earlier in the week has provided quite a bit of relief of the pressure in my abdomen. My distention is down considerably and I have a lot less pain that was being caused by the trapped gasses in my GI tract. The NG tube is diagnostic and will probably be in a few weeks and then we will make a decision on having a G-Tube placed in my stomach to accomplish the same thing as the NG tube. So . . . Some more waiting . . . 

I did have quite a bit of cardiovascular problems this stay with my blood pressure dropping critically low along with pulse rates in the low 30s. This is great to take pressure off of my aortic aneurysm but also low enough to cause me to pass out if I am not extremely careful. The complexity is that it doesn’t just stay low but suddenly I have pulses over 150 ppm and high blood pressure. We are establishing care with a Interventional Cardiologist at the University of Washington up in Seattle to coordinate care with my Interventional Cardiologist at the Mayo Clinic. Of course, we have concerns that the cardiovascular problems are related to instability of the brainstem as that was the culprit last time and resolved after my brain surgery and fusion in 2013. We will be traveling to Mayo the first of May and are looking forward to addressing my new physical developments with the team in Phoenix. I have been referred to a Vascular surgeon in Connecticut who deals with complex vascular issues. This doctor is also just 2 hours away from my neurosurgeon and neurologist in NY so we are hoping to make a quick trip to the East Coast after Mayo if we can get schedules to align. We would love your specific prayers for all of the scheduling and insurance details to work out smoothly. And so we wait . . . 

I’m convinced God doesn’t miss a single opportunity for me to trust Him. Waiting can be good. God will never give me something that is not good for me so I can take confidence in His timing. I can wait with confidence, peace, and joy that He is working out His perfect plan for my life.

“Wait for the Lord; be strong, and let your heart be courageous. Wait for the Lord.” Psalms 27:14

“I wait for the Lord; I wait and put my hope in His word.” Psalms 130:5

And so we wait . .. . And because of each of you we know we wait with your love, support, and encouragement. Thank you is very inadequate but we are forever grateful for you.

Lee