Wednesday, November 9, 2011

November 9, 2011 - Day 39

5 months, 4 days since diagnosis
day #48 of current hospital stay

Riker got her G-tube today. It took a lot longer than we thought but it's done. No more NG tube. No more tape on her face.

This morning she was very grumpy again. In fact, she was even worse than she has been. Thankfully, her primary nurse was on today. I insisted that Riker was not herself. I didn't want to delay the surgery but I was sure something was wrong. Riker was either sleeping or crying. She would cry less in my arms but she'd just sort of hang there and look around. She wasn't playing much... she wasn't talking or anything... Her cough seemed worse. Her nose was still running like crazy - maybe even worse.

While Riker's nurse was at rounds, I decided I couldn't wait. I paged out. I know that she was going to talk about Riker but I was just not comfortable with Riker's behavior and wanted someone to look at her immediately. It wasn't a lot of help. Maybe she's just teething? I just kept insisting that this didn't seem normal to me. If she was at home with me, a regular, happy baby, I'd take her in to see the doctor. Then it occured to me. If I was bringing her in for these symptoms at home, what would the doctor find? Runny nose, possible teething, irritability? Can we look in her ears?

The nurses said that wasn't something they could do but they'd ask the doctors. I urged them to have that happen sooner than later. Soon after, the skeptical Nurse Practitioner came in to check. You know the ear and eye device that hangs on doctor's office walls? Well, the one in Riker's room didn't even have a plug. They NEVER look in patients' ears. Wow.... So, low and behold, guess who has an ear infection? That explains a LOT and feels like an oddly normal baby moment. 3 days of "unexplained fussiness?" Hasn't almost every mother gone through that? Feeling bad when they finally make it to the doctor's office only to find out their child has a raging ear infection? Well, hopefully this means Riker will be back to normal by tomorrow night.

The G-tube procedure went off perfectly. The tube she has had in up until now is an NG-tube. This stands for Nasogastric Intubation. In other words, a tube that goes in through her nose and down into her stomach so that she can receive feeds through the tube. The G-tube is simply a Gastric feeding tube. It is a tube that goes directly into her stomach for long term feeding needs.

It's not expected that Riker will be consuming all the calories she needs by mouth anytime soon. She can consume as much as she wants by mouth and be supplemented by her tube for anything she's missing. When she finally does consume what she should, (or nearly what she should) we do not have to use the tube anymore. It can be removed as early as 6 months to a year from now.

The tube she has in right now is called a PEG. It is a basic tube coming from her belly that we will use to give her food and meds. In 4 months, when it heals, we'll put in a Mic Key. This will be more like a little plastic button and be significantly less obtrusive. The G-tube is not sterile and she'll be able to bathe or swim once it is healed. Until her central line is taken out, we won't be doing any of those things, but, we'll be able to do them once that's out.

So now, Riker is resting comfortably. She has morphine ordered for surgical and ear pain. She's on antibiotics to take care of the ear infection. Hopefully, she'll continue to rest comfortably through the night. In the morning, we'll start seeing if she can tolerate feeds again.

We are on target to be discharged on Friday. Things are all coming together now. I heard back from the Ronald McDonald House and we should have a suite ready for us tomorrow. I've asked Josh to come down and we should be able to get ready for Riker's discharge. I cannot believe that two days from now, we might be walking out of this hospital.


  1. Wow, home tomorrow? What an amazing story/journey you are on! My best to you, Jon, and your daughters....

  2. discharged, but not home. we will be staying in Boston for a while still.