Dear Ian,
About this time, two weeks ago, I crawled into bed fully clothed, watching you sleep, listening to your breath. We both knew, even though we didn't say it out loud, that things were going downhill ... and watching you then confirmed it; your breathing wasn't right. I fell asleep for a bit, until you walked (staggered) to the bathroom for a drink of water ... and I listened to you cough as you tried to swallow. I let you settle back into bed, walked downstairs, and called the ambulance.
We spent a few miserable days in the step down unit; the doctors still wanted to wait and see. Your ability to move and speak and breathe deteriorated. I had a brief fainting spell and you held my hand over the end of your bed as I lay on the floor, surrounded by hospital staff. I was terrified they would take me away from you, and embarrassed that more people were attending to me than you at that moment.
Your Nicaragua buddies came to visit ... little did they know they arrived just in time for your breathing ability to go seriously downhill. Shortly after I kicked everyone out and shut the door, we exchanged some words ... you were hell-bent on pulling the oxygen tubes out of your nose and I was shouting that you were NOT allowed to not BREATHE and to stop fighting us, dammit. What I didn't realize at this point was that you were already oxygen deprived and starting to become "not you." The guys came in and gave you silly presents; fuzzy slippers, nerf guns to shoot the nurses, a whoopie cushion. But to no avail; the nurse pushed the button, you were "coded" and the breathing team appeared, hustling you off to the ICU. Worst. Night. Ever. Later - Dad says around 2 am, he went back to visit you ... and it was at that moment that you stopped cooperating with the different oxygen mask, and the nurses ... and stopped recognizing Dad or me. The look of fear and anger in your eyes was so intense, and so NOT you ...
A week ago yesterday, you were zoomed off to your second brain surgery! We were assured the A-Team was on the case (not THAT A-team!). In half the time it took to remove that pesky tumor, the doctor removed what he could of this clot and you returned to your ICU room.
The next few days had ups and downs; you squeezed hands and gave thumbs up, but you developed pneumonia and a collapsed lung. You wrote letters on paper or with your finger on the sheet; we tried as best we could to both communicate and allow you rest. You begged for water but I could only provide a swab sponge to the mouth, and even that had to be suctioned out, lest you get more water where it wasn't supposed to be. Your mom sat vigil in your room ... at one point you kicked me out with great fervor, and your mom the same. We didn't take it personally.
The church. Oh my. How they've taken care of me/us, met needs I didn't know we had, covered us in love and prayer. Your Nica buddies and Bible study pals have made regular visits, as have the pastors. The cards! I can't wait for you to read them all - sweet, funny, hand-drawn ... awesome.
I love you so much. You've dropped so low and risen so high these past two weeks ... they're already joking at how insufferable you'll be once you beat this thing. I want this ring back on your finger and the light back in your eyes. I want that Saturday night back, when we all lined up in bed and read stories together.
------------------------update for today ----------------------------
Most all the wires are out. Just that attractive feeding tube in the nose, and you can see the hose leading up to the trach. He is completely off the ventilator, breathing on his own (that tube provides a slightly higher oxygen content, but does not force air into him at all - changes his air from 22? to 30% oxygen, I think is what the nurse said).
He is weak and tired. They have twice had him moved into a chair-contraption to work on strength and clear out his lungs (he's able to cough the yuk out). Just the effort of that move and coughing tires him out so you'd think he was sedated, but he's just THAT tired. It's hard to see a strong man so weak, but it's so amazing to see him breathe on his own ...
Audrey and Ezra both got to see him today, and he them. We didn't get a smile out of him, but he did wave He was just too tired to keep his eyes open long, but he knew they were there. Ezra said, "He's sleepy, and he'll talk when he feels better." And Audrey told him all about her weekend with Gramma.
Next: rehab. The nurse seemed to think it would begin at the hospital and not another facility, so we'll see ... the key to moving from the ICU was the breathing thing ... next will be swallow tests and a smaller trach and A TALKING ATTACHMENT. Food? swallowing on his own? I have no idea what this week looks like, but I know it's going to be an exhausting one for all involved.
The kids are taken care of, I'm able to visit every day, people are standing by to provide us with meals and just about anything we could think of. If you are one of those people ... I can't even begin to express how thankful I am that you are in my life. To have our needs met so seamlessly has been such a blessing and a relief.