Navigating surgery and a hospital stay

We are home again! I can breathe a sigh of relief and once again rearrange our days to accommodate our new normal. More on that in a minute. I'm sure you want the details from our stay first.

Can I start with a confession? I cannot leave my house without forgetting something. Regardless of how intentionally I prepare or how many lists I write, there is always something. This time it was my nice wearable pump. I didn't realize until I was well on my way.

Luckily, this isn't my first hospital stay, so I knew they'd have one there that I could borrow.

Unfortunately, I would need to hold them in place, and I wouldn't be nearly as discreet.

But those were logistics I could figure out later. Most important was getting to the appointment safely and making sure Tulla had everything she needed.

Her surgery got off to a late start. All the nurses were in love with Tulla, saying how absolutely adorable she was. She was loving the attention. Even though she was getting tired, she was all smiles for them. Apparently, she didn't want to miss a single minute. She was still smiling when I gave her one last hug before surgery.

Then came the hardest part for me - waiting. I killed some time pumping in the lactation room, and came back to a message that she had done beautifully and was comfortably asleep. Surgery was quick and without complication, which is exactly what you want. The surgeon came out and talked with me.

Then I had to wait until she woke up before I could see her.

My advice if you have to spend time in the hospital, is to expect it to take twice as long as you think. So if your check-in is 8:00 and surgery is supposed to start at 9:00, it probably wont start until 10:00 or 10:30. If they say something will be ready in an hour, you probably won't hear about it again until two hours later.

I call it "hospital time." If you've ever stayed in-patient I'm sure you know what I'm talking about. I have anxiety about a lot of things, but that's one thing I don't stress about. At worst, I'm prepared. At best, I'm pleasantly surprised. It just keeps me calmer overall.

Anyways, back to Tulla. She was a total rockstar. Basically, she slept it off. The afternoon passed quietly with her resting and recovering. The nurses checked on her. The surgery team checked in. The hospitalist stopped by. I talked with case management. The pharmacist called twice.

Come to think of it, I spent a lot of my day repeating the same information to multiple people. See, things are complicated for Tulla because she sees specialists at two different children's hospitals. They keep their records on different systems, so one can't see the notes from the other. Requesting records takes time, so I'm the best source of information.

They still get things wrong, though. They tried to give her an old prescription that I had told the pharmacy she wasn't on anymore. They had four inhalers listed for her when she only takes two. I specifically told them one medication is taken twice a day, but they only had it once and almost missed a dose.

As a parent, always recheck every time they want to give your child something or do something with them. Ask questions, and don't let them rush you into anything.

We passed an uneventful night snuggled together and learning the new process for feeding Tulla. I quickly learned that clamping the tube is very important before you unhook anything. There's pressure behind a G tube which I'm not used to, and if you don't things start leaking out! I got squirted with water after flushing it out more than once.

Through it all Tulla is still the sweetest, most joyful baby. She doesn't let her circumstances get her down. Nothing dampens her smile.

The next morning, the doctor was eager to discharge us. A little too eager. She placed the orders before I had even finished learning about caring for Tulla's new tube. I hadn't even tried disconnecting the tube adapter from the button on her belly yet. The GI doctor hadn't come by to see us. I also didn't have anything in place for the new supplies that she would need for me to feed her at home. I don't like staying in the hospital even one minute longer than I have to, but I've never had to fight to stay for the things we've needed before.

That new experience wasn't my favorite. However, our nurse was fabulous, and we didn't leave without the things I needed to make sure Tulla was all set up.

The biggest difference with her feeds is that it now takes an hour to feed her instead of 20 minutes. We have to go a lot slower since it's going directly into her stomach and the port is new. I'm also learning that regular clothes aren't fun to deal with when you need to access her abdomen every 3 hours. I basically get two hours in between feeds to try and get everything else done during the day. Tulla and I are learning lots together. The good news is that we get lots of time to snuggle.

I’m learning to slow down. We still have appointments, swim lessons, soccer camp coming up for the boys, and everything else in between—but stressing out doesn’t help. So I’m focusing on what I can control: keeping Tulla comfortable, staying organized, and asking questions when something doesn’t feel right.

If you’re in a season of “hospital time” or learning new medical routines at home, I see you. It’s a lot. We’re taking it hour by hour over here, and I’ll keep sharing what we learn as we go.