Post Op Day 26, 27, 28 Ups and Downs

I promised that I'd post a picture of the view from our room of the State Mental Hospital and the old 'Insane Asylum'. Nancy was right when she said we might all have to spend some time there if Nate was here too long. I considered checking us both in Monday evening.

The current Massachusetts State Mental Hospital is the red brick building, and the "Insane Asylum" is to the right, just up the hill. It really is a beautiful building, but now that I know what it's purpose was, I can't help but think it's a little creepy.

Monday was a good day for Nate. He progressed well on his regular diet, but he could only eat a few spoonfulls before he felt full, and his appetite had not yet returned. Even though he hadn't eaten for so long (12 days), he's had to force himself to eat a little bit for each meal. Since he won't be able to eat his calories, he's still had TPN (IV nutrition) running around the clock to give him the calories he needs to heal and stop muscle breakdown. He was also still on four IV antibiotics for the abdominal infection, and was receiving replacement fluids for hydration.

Nate with all his drugs. The TPN is the big

 white bag.

When the TPN was ready to be changed, our nurse unplugged Nate from the IV pole, wrapped up his PIC line, and Nate got to....get ready for this....take a shower! He'd gone 13 days without one! We kept him as clean as we could, but there's nothing like a long, hot shower. It was the best therapy he could have received! He looked so good!

Nate's kidney function has gone down consistently since his 2nd surgery so they've been watching it closely. The renal doctors never made it sound like a big deal, but Monday evening our nurse told us that there was a new order for Nate not to have anything to eat or drink after midnight because he was going to have a kidney biopsy. Then she told us that cultures from his wound drain came back and showed staph and 'another bacteria', she couldn't remember which one. After all Nate had been through, and through all the ups and downs, I was not prepared to hear that anything else might possibly be going wrong. I took this opportunity to have a little 'freak out moment'. Yes, this is when I considered running up the hill to the old 'Asylum'.

My anxiety radar is at the top of it's game, and it doesn't take much to set it off. Nate was also a little devastated about not being able to eat or drink. It was way too close to his 12 day fast for him to even think about going back. He had also been put on oral meds earlier in the day so he knew he would be nauseous if he took them on an empty stomach. It turned out to be a very long night.

The next morning (Tuesday), the Chief Resident and his team came in for morning rounds and apologized like crazy for the miscommunication. Actually, they were less apologetic and more angry. The renal team failed to pass their orders and plans through the surgical team, and nothing had been approved by our surgeon. By the time Dr. Lambert came in, around 11:00, she had straightened everything up. The renal team was "over-enthusiastic" about their plans for Nate, and there would not be a kidney biopsy. The attending renal doctor agreed that instead of going to the extreme of a biopsy, they could start Nate on steroids and see if that made a difference. The hope is that the kidneys are just inflamed from all the trauma of the surgeries and infection, or from a reaction to a medication he's received, and that when the inflammation resolves the kidneys will return to normal function.

Since the culture from the abdominal drain came back, they now know specifically what they are dealing with so the renal team recommended that they stop giving all four IV antibiotics (since one of them could be aggravating the kidneys), and just start him on the one antibiotic that will cover it. Dr. Lambert also said that the staph growth was not unexpected, and should not be a worry because he's been on all of the antibiotics so the infections should be pretty localized by now. His white blood count also dropped from 26 to 19!

Phew! There's nothing like a communication breakdown to get the imagination rolling! We've definitely been living with a heightened level of anxiety, and I can't wait to have 'normal' anxiety.

With all of the IV antibiotics stopped, and since Nate was finally eating, they decided to put him on all oral meds! Nate couldn't have looked more relieved! He was so glad to be able to get up and out of bed without having to drag that pole around with him.

That's one full IV pole!

It's getting a little thinner!

Over the day, they started taking away one IV medication, and one pump at a time. Our measure of progress has become so strange!

Notice the IV meds? They're all gone! The pumps are unplugged, and Nate is freeeeeeeeee!

It was a great way to start the day. We went for a couple of walks. Nate had another shower. I took him on a walk, in a wheelchair, outside. His appetite even got going, and he ate half of his dinner! I think the steroid they started him on has given him a little boost. His nurse came in last night and said, "Who is this guy? I don't even know who you are"! She's been our nurse a number of times over the past three weeks and she couldn't believe the difference she saw, even from the night before.

It seems that Nate has turned a corner. Just hoping and praying that we can stay on this path now. There have been so many ups and downs that it's hard to believe there actually may be a light at the end of the tunnel...not a freight train...just a light!