What a day.
It was Oliver’s birthday, and we face timed with Neil in the morning. He looked pretty good, and he said he’d slept fairly well and was feeling pretty good this morning.
We did presents with Oliver at home and then Seth and Ben went to school and I took Oliver and Ivy to my friend Jen’s house. Then I went to the hospital to see Neil. I really wanted to catch the doctor’s rounds this morning.
I got to the hospital around 9:30 or so, and Neil was looking pretty uncomfortable. His NG tube (the tube that goes from his nose to his stomach) was really bothering him. He was irritable and in pain. The doctors got their shortly after I got there and began their bedside discussion of Neil’s care. Neil was looking more and more uncomfortable.
While the doctors were there Neil’s pain just got worse and worse. His NG tube was clearly really bothering him, and the doctor said it could come out, so that was good. By the time the doctors left Neil was in so much pain that he was having trouble breathing. He was getting agitated and very distressed.
The doctors left to go write their orders and stuff and Neil was starting to freak out. Like Freak. Out. I tried to just take the NG tube out for him but he didn’t trust me (thanks dude). The nurse came within a few minutes and pulled it out, then she left. Neil could still not seem to catch his breath. He was in incredible pain and just kind of went off the edge. It was horrible.
At this point the pain nurse turned up. Neil is apparently in love with that lady, because oh what a welcome she received. But with good reason, I guess, because she had fixed him up yesterday when he was so uncomfortable.
When she came in she noticed right away that Neil’s epidural was TURNED OFF. The nurses had turned it off because that’s what they traditionally do on post-op day 3. Which Neil sort of is because he went for surgery on May 5th. But he’s technically only post-op day 2 because he didn’t come out of the OR until May 6th. Anyway when she saw that she was MAD.
The doctor had already decided to switch Neil’s pain button from morphine to hydromorphone to see if that would work better, and the nurses were working on that, but Neil needed someone to pull out the big guns, and pull them out fast.
The pain nurse right away went to get a local anaesthetic to give Neil a top-up through his epidural. She stayed with him for about half an hour to make sure he got comfortable. And he did. When she showed up his pain was 10/10, and when she left he was down to a 4/10. It was about 11 am when Neil was finally comfortable. He fell asleep then, thank goodness.
He has thankfully remained much more comfortable for the rest of the day. The hydromorphone is working better than the morphine had, and the nurses can give him an extra, bigger dose of it if he needs it. He got up for a little walk today and did a lot better than he previously has. He says right now he is feeling so good, and has just been able to relax the last couple hours.
The other thing that happened today is that Neil had been running a bit of a temp, so the doctor ordered a chest x-ray. It apparently came back clear but he will go for a ct scan tomorrow to make sure they can’t see any kind of problem somewhere that might be causing a temperature. The last thing Neil needs is an infection. Because he’s been on prednisone for six months, he is immunocompromised and so his body has to work harder to heal up and stave off infection. The doctors seem pretty on top of that fact.
I talked to the doctor today about TPN for Neil (total parenteral nutrition AKA food through an IV) because he hasn’t been having anything to eat or drink since Sunday (but just so you know is not hungry or thirsty at all). The doctor said that they will get Neil a PICC line (like an IV that goes into your upper arm and all the way up to right close to your heart) because you need one for TPN. He said people can go about 7-10 days without food before things kind of start to go bad, and Neil’s at around day 5 now. The PICC nurse is around tomorrow so I don’t know if that means that’s happening tomorrow or what.
Today was kind of shocking for me. Like the enormity of the situation kind of hit me. It’s a big deal, this surgery that happened, and Neil’s pretty darn sick. I feel like it could be a long recovery. But then again, who knows. We’ll just take it one day at a time. Some days will be good and some will probably be not so good, but Neil will pull through and feel better than ever in the end, that I know for sure. Neil’s really excited about how this is all going to turn out, and I am too. I really, really am.
The nice thing about today is that the kids got to see Neil. I think everyone was happy to see each other. Oliver was definitely a little wary and didn’t really want to get too close to Neil, but Neil won him over with a birthday present. Ivy was mostly just curious, and oh was she happy to have some cuddles with her dad. Seth and Ben were fine. Ben thought the catheter was crazy and he seemed to think it was funny/weird that Neil was just wearing a “shirt” and no pants. “Oh I guess that’s why you’re covered up by a blanket, Dad.” He was funny.
Neil felt a lot better this evening, and we had a nice “date night in” just chilling out together, although Neil totally, 100 % fell asleep mid-sentence at least twice during our conversations. So maybe I didn’t have the most exciting things to talk about, but still, rude. Just kidding. We really had a nice time together this evening. I tucked Neil into bed and came home to eat some amazing cookies a friend dropped off today. What are these even? I need the recipe.
I’m exhausted and there are empty yogurt containers littering the kitchen, dishes everywhere, and wrapping paper strewn all over my bedroom floor. I don’t have the energy for it tonight and I don’t know if I will tomorrow either, but who really cares. My kids are gone to grandparents/aunties and uncles until Monday or Tuesday and I’m just going to spend the next few days either A) with Neil or B) being lazy. Possibly C) Being lazy WITH Neil.
Anyway please continue to keep Neil in your prayers, that pain will continue to be well-managed and that the fever goes away.
Thanks for reading.