Eiche fam

Moving out of the ICU

When Namine came out of surgery, she was taken to the ICU floor. To be specific, it was the PICU, which stands for “Pediatric Intensive Care Unit” — since we were, after all, in Children’s Hospital. Being in the ICU was crucial for immediate post-op for a few reasons, not the least of which being a closer monitoring on her heart. (The laparoscopic surgery she’d received is known to be harder on cardiac patients.)

Namine spent one night in the ICU before being moved to a general admission floor. The surgery team had initially predicted that she would likely stay in the ICU for the entirety for her stay, and that when she was discharged it would be from there. After being monitored overnight and having an EKG, hospital staff surprised us the following evening by telling us that they were moving us. We packed up our bags — not an inconsiderable task — and followed Namine’s nurse as she pushed her bed down hallways and up the elevator.

Recovery progress

When Namine came out of surgery, she was — as expected — in a lot of pain. For the first couple days, she was kept on stronger pain medication through her IV. At the start, she found it difficult and painful to move at all. She worked on her movement slowly, starting with sitting up and rolling. As she acclimated to the ways she had to modify her movement, she also weaned herself off the stronger medication. Within a couple days, she was taking mostly Tylenol and Advil for the pain, with the stronger pain meds prior to larger movements.

The major roadblock to Namine being discharged from the floor was her being able to transfer to and from her wheelchair. Prior to the surgery, she was fully independent: she could navigate getting to and from the car, toilet, bed, and shower without assistance. She found that at first, merely rolling to her side — not even on her stomach — was exceedingly painful. The first time she got into her wheelchair was the day after surgery, and we used a portable lift called a Hoyer to help her get there.

At the time, Jessica and I thought that we would need a Hoyer to get Namine into the car, as well as having one of our own at home to help with transfers there. Were that the case, we’d have enlisted the help of insurance, because they are expensive. (In fact, we’d already started that discussion prior to surgery, since we didn’t know what recovery would look like.)

Two days after surgery, however, Namine attempted the transfer herself. She moved slowly, since every movement was painful, but she got into her wheelchair all on her own. She did the same for getting onto the toilet, only needing the slightest help in moving her left leg (the one whose knee does not bend). She was also able to do the reverse, in getting back into her chair from the toilet and back into bed at the end of the day. That last was the most difficult, due to the height difference. These successes served to boost her confidence in becoming independent much sooner than the surgeons expected.

Unfortunately, Namine had an additional complication from surgery. When there is a long surgery, as hers was, doctors will put inflatable sleeves called intermittent pneumatic compression (IPC) devices on your legs. Namine’s legs are not typical, and in using them, it’s possible the IPC damaged a nerve in her right leg. It might also have been a result of the surgery itself. Whichever the case, her leg was numb from her knee to her ankle; even by the time we came home three days later, feeling still had not returned fully. According to the surgeons, in fact, it could be up to three months before her leg would be back to normal. In spite of that, they don’t believe the damage is permanent.

Heading home

As I mentioned, Namine came home three days after the date of her surgery. As has been the case, the multiple teams involved in her care all needed to give their approval. She had had a couple apneic episodes at night, so we had to wait for cardiology to give their okay. Physical therapy had also been following Namine closely, but she showed them marked improvement in transfers and independence. It was a challenge for Namine to climb into the new car, but she did that too.

A new old bed

It occurs to me now that I don’t think I ever wrote about the thing I had to undo, now that Namine was coming home. So, let me back up a little bit. When we first moved into our house, Jessica and I took the bedroom across the hallway from the bathroom. That wasn’t ideal though, so we swapped bedrooms about half a year later.

Some time later — I don’t remember how much later — we swapped out Namine’s bunk bed for a queen size bed. It wasn’t only for the mattress size, but also for independence reasons. It was easier for Namine to make her bed by herself because the queen’s frame was pretty minimal. Unfortunately, in its frame the queen mattress was also higher up. This wasn’t a problem, until now, that is. So in order to make transfers easier for Namine, I swapped out beds again, reassembling the lower half of the bunk bed in her room again.

When Namine is recovered, after all her hernia repairs are complete, I’ll swap out the beds again. (On the plus side, she gets to have a Star Wars bed again for a while.)