Today was a hard day for Patrick. It seemed to start out ok. His nurse overnight did a great job keeping him comfortable. At 6 he was well rested and talkative, though a little sad. His nose was itchy and when he rubbed it, the cannula in his nose rubbed just enough to make it bleed. His oxygen saturation was low, so we had to suction his nose, too, which is pretty awful for him. But, with Daddy cuddling, all was good for a few hours. Until they wanted him up to walk. That hurt.
When he got to the chair (about 2 feet away), he was sore and tired, but in good enough spirits that he dared work himself down into his favorite snuggly sleep position. That’s when the trouble started. Snuggling down made his oxygen saturation dip even lower. Soon, his nurse came back to suction his nose, really thoroughly this time. He was hysterical. And, it didn’t help.
So they decided to call for a chest x-ray and his nurse had him walk back to his bed for it. He was already sore from fighting the suction and walking was agony. But when he was done walking, he still had to sit up straight on the bed and have an x-ray taken. And I had to step out of the room while they did it.
Unfortunately, that x-ray showed that Patrick has gunk in his lungs and fluid buildup around his lungs. (They run a ton of extra fluid in the first couple of days after a transplant to make sure the veins stay open and happy so the graft will take… All that fluid has been just sitting in Patrick’s tissues and he was rather plump and sore this morning.)
They’d already started him on a medication to help him get rid of the fluid. They decided to order some medicine to help him cough. Patrick is refusing to cough. So they gave something IV and then brought a mask to administer a breathing treatment with.
That was the end. Patrick didn’t want a mask on his face. (I’m sure he’s seen enough of them in the OR.) He toughed it out the first few 10 second tries I did for him… But then he decided to fight… And when I tried to help hold him because he was fighting… Well, he lost it. Kicking, screaming, squirming, fighting with all his strength. This is amazing considering how little strength he has. But it surely left him worn out.
The breathing treatment didn’t work. They had to increase his oxygen several times to get things stable. Patrick was spent. He just sat there, not moving, not talking. I finally told the doctor that this wasn’t like him. We were going backward if he’d lost his words again.
They listened. They let him rest. They added some pain medications. They ordered a different kind of breathing treatment that just gently massages his sides to break up the junk in his lungs. And he has done better. He’s seeming calm. He’s slept a bit. His vital signs look a little bit better. And I’ve learned my lesson about letting them push him. Patrick is not one to be pushed. Challenged, yes.. But not compelled. I won’t let tomorrow go this way.
The hardest thing about the day is how just plain sad Patrick was. Because it was Monday, we had a parade of people in and out all day introducing themselves: social work, ostomy team. nurse coordinators, child life, and on, and on. And all the while Patrick just sat there looking like he wanted to cry but with a firm determination he wasn’t going to cry in front of anyone. And anytime I tried to talk to him about it, either his oxygen saturation would drop or someone new would come in.
He’s figured out he has an ostomy. (Where the intestine is brought outside the abdomen in one spot and drains into a bag.) He needs this so they can monitor for rejection for a year. I’m sure he’s confused. But anytime I’d try to help explain, there was one more person. Always trying to cheer him up. Some days, you don’t want to be cheered up. Some days you need to cry.
I think the treatment plan is better now. I’ll spend the night in the room tonight to keep an eye on things and to help him feel comforted. Tomorrow is another day. (And hopefully a good one, as tomorrow Brian goes home to get what Patrick and I need to stay here for a while and I’m gonna be on my own.)
We did have some good things in the day. Brian made it to Walmart which means we have food and socks (only I packed socks in the hurry to leave) and slippers for Patrick and some other needs. We got a lot of answers to questions we’ve had from the people who came by and called. I got time to get some of the e-mails and phone calls taken care of to tie up loose ends at home.
And in a very special bright spot, Patrick received 35 e-cards today. How amazing it was to read words of encouragement and support from friends and family and also from people we have never before met. I’ll admit, that is what got me through the moment today when my heart was breaking.
Thank you. Thank you!
Patrick Hoopes 