Finally home .... it was a rough hospital stay. I posted last on Day 3 and just now in the last day feeling well enough to share my thoughts. Days 4, 5, & 6 were pretty tough. I developed secondary issues that almost landed me in the ICU. I had trouble maintaining my blood pressure and the docs feared sepsis had settled in. My fever shot to over 103 degrees and I had severe muscle rigors that required IV meds to calm. They started a 4 hour sepsis protocol and by the end of the 4 hours I had come around some and my vital signs were slowly improving. I developed high levels of a protein that measures heart damage. Ran some immediate tests that helped ease our minds of the stability of my aortic aneurysm. I will be following up with my cardiologists at Mayo and at the UW. There were other issues addressed including blood count issues and out of range electrolytes. It is felt that we need to spend some more time addressing my GI issues and see if we can find a plan easier on my system. Currently my gastrostomy tube drains everything leaving me dehydrated and lacking important enzymes and minerals. Right now we stay ahead by having 2 days at week at the Infusion Center at the hospital. I am there over 7 hours each day. Not the part time job I had planned on. God must not have gotten the daily calendar I sent up that had my plans for myself laid out. Oh, now I remember God’s words to the prophet Isaiah “For as heaven is higher than earth, so my ways are higher than your ways, and my thoughts than your thoughts.” Isaiah 55:9
The future journey looks daunting right now with quite a few things to follow-up on. I won’t bore you with details except to ask you for your prayers for expedient appointments and knowledgeable doctors. Also, we may need to go to the Mayo Clinic sooner than expected so prayers for clarity would be greatly appreciated. In summary, I have to say that my Ehlers-Danlos is progressing at a disturbing pace and my Mast Cell Activation Disease is contributing complicating factors. I’ve always promised to be honest and i guess vulnerable as well.
So..Here is a communication i had with my beloved Pastor yesterday:“I’m sitting here in tears. The road ahead is going to get rougher but it’ll never be rougher than the cross and I have to remind myself that almost by the minute now. God, send out an army in the darkness to find me. i know you’ll rescue me. God be my provision and my sole focus. Help me buckle on my spiritual armor. You hear me when I whisper, “I have nothing left.” Your heart causes my heart to trust your love and faithfulness will be enough.”
I am whispering now on this journey. I am exhausted. I’m whispering to you - “Please pray for Steve and me.”