Mon I felt he was doing better. I posted he was on 8 Lpm, he was on 15 with a mask and getting his O2 sats up to high 80's. I thought that was good.
When I left him mon night I was o.k. with him, I felt he was in the right place, getting what he needed and not the end of the world, Shawn was back in the world of the living.
Tue morning I called him, he was still SOB, but better by my standards, he could actually talk on the phone. They had already placed his PICC. Our daughter, Sara Lou wanted to see him.
It is 3. for the toll and it was 17 to park on Mon, plus the gas. Shawn and I decided, I would sleep (sleep had eluded me mon night, too keyed up) , sleep, call our families and tell them he was "in", go to the bank etc then pick up Sara after school and bring her in with me. Going back and forth to the hosp twice in one day was exhausting and expensive. He would call me if anything went awry.
I talked to Shawn 3 or 4 times he seemed o.k. to me. He said he was.
Tue there was a Red Sox game, you pass Fenway on your way to B&W.
We get there around 5. I am literally in the elevator and the cell phone rings, It's Dr. U, he wants to know where I am.
I get up there introduce Sara, send her into the room.
Dr. U tells me that Shawn is doing poorly, that they could not keep his sats up and that if he didn't improve SOON, he would be trans to ICU and VENTED!!!!! Dr U was giving me the numbers on Shawn, CO2 was too high, and the rest of the facts, he wasn't exchanging. he couldn't nearly pass the 6 min/500 ft walk test. On 15 liters and mask he dropped into the 70's. Shawn was going to have a cardiac cath on wed among other things to wrap up his tx eval asap
I was so taken back with all of this I didn't retain much of what he said I guess.
All I could think of was Shawn being vented, how the hell did it get this bad.
I was told to be early wed because we had to meet with psyche, transplant, social work, etc
O.K. I'm sorry I'm tired this has been crazy I'm going to wrap this up with phenomenal news.
Shocking surprising miraculous, amazing, GOOD news.
Wed morning I get in there and Shawn looks great! Not just by my standards anyone would agree.
Overnight while sleeping like a baby he suddenly began satting 96-98% on the 15 lpm on high flow nasal can HR down to norm, 70's.
The doctor lowered his O2 to 10lpm via nasal can !!! Suddenly everything was not so dire.
I spent the day with him, he showered, still staying in the low 90's dipping to 88 here and there but still good. He ate, talked, dressed etc and still good.
He had CT scan of sinus, chest, 22 yes 22 tubes of blood drawn via PICC (phew). The cardiac cath was pushed to Thur.
Apparently the CT looked better than expected as well.
Everyone was excited about his turn around, we spoke to so many members of Shawn's CF team and everyone was very pleased, a little perplexed, but pleased. Shawn had coughed up all kinds of interesting and disgusting things. (no green, just cream)
Shawn had a very good day. By the time I left at 9:30 last night they had lowered his O2 to 8 Lpm !!!
Who knows what tomorrow/today will bring but maybe he is actually getting better.
I have to mention that tue night when I got home and my mind was reeling, I went to my CF site to update.
There in chat in the middle of the night was a friend.
He talked me down so to speak. He made everything make sense to me, he helped me know what to do for Shawn. He gave me a peek of what might be going on in Shawn's head, why he was behaving the way he was, helped me understand. He helped me be a better wife to my husband. He prepared me for what might happen, what the tests were looking for, what Shawn's body was doing. Shared his own experiences, shared his wisdom. He comforted me. He talked to me for hours. His words gave me peace that night and I will be forever grateful. I'm not sure how I can thank him, but I'm going to try.
So to all of you who said your prayers, lit your candles, sent your good vibes and best intentions, he got them.
Thank You Thank You Thank You
Tomorrow, today? Thursday who knows what it will bring but tonight/this morning I feel lighthearted.
CF lovely, full of surprises.
Rest in Peace Aunt Marybeth
1 year ago