Loving Him Through The Hard Decisions

                        

Life lately has been like reading a medical report I never asked to understand, and yet here we are, learning every word because it’s our life.

Mike met with the infectious disease doctor on Friday, again to talk about his back, his Ankylosing Spondylitis and what if anything can be done. The official report describes him as a 62 year old man with “Complex medical comorbidities”, clinical words for a life that has been anything but simple. Diabetes with nerve damage, end-stage kidney disease requiring dialysis 3 times a week for the last year, and longstanding Ankylosing Spondylitis that has slowly and painfully taken its toll on his spine.

For years Mike was on strong medications, biological immunosuppressants to try to manage the A.S. but those came with a cost. He has developed repeated infections- skin, bone, joint. Mostly staph infections that just keep coming back. It got so severe at one point that he lost 2 toes on his right foot and a quarter of a toe on the left. Eventually they had to stop those medications all together. Still, the infections continue to be a battle.

His most recent hospital stay (April 20-28) was for another infection in his left lower leg. An open wound on his ankle and foot that tested positive again for staph. IV antibiotics, more monitoring, and more waiting. He is home now on oral antibiotics and thankfully it seems to be slowly improving, but not gone, not yet. Once again we have a visiting nurse 3 x a week in our home.

His back has deteriorated to the point where surgery is being considered, surgical fixation to stabilize things and hopefully give some relief and mobility. His back doctor laid it out plainly, an 80/20 chance. Eighty percent chance that surgery could help move him one step closer to getting on the kidney transplant list and improving his quality of life. 

Eighty percent sounds hopeful!

Then infectious disease stepped in with their reality. Because of Mike’s history, because of the recurring staph infections, there is over 50% chance that if he has the back surgery, the infection could settle into the hardware, into the rods in his spine.

Let that sink in!

A surgery meant to help him could open the door to something even more dangerous.

So here we are, right now nothing can even be considered until his current wounds are fully healed and closed. That’s why this last hospitalization mattered so much. Why we are watching and waiting so closely. Emotionally? It feels like a damned if you do and damned if you don’t situation.

Mike is tired. Truly, deeply tired. Living with chronic illness day in and day out wears on a person in ways that are hard to explain unless you see it up close. The appointments, the pain, the limitations, the constant unknowns, yet he still wants to fight. He wants more time. More time to sit with our grandchildren, to watch them grow, to see who they become. More time to witness the lives of our children unfold. More time just being here and being with each other.

So we sit in this in between space right now. Waiting for healing, weighing the risks, praying for wisdom, and holding on to hope, even when it feels fragile.

If you think of Mike, say a prayer for healing, for guidance and for strength in the decisions ahead. This road is not an easy one but we’re still walking it together.

“But I will restore you to health and heal your wounds,” declares the Lord ~ Jeremiah 30:17