The sitch. For any new readers out there, my son Daniel has food issues related to autism and prematurity and was scaring the pants off of his gastroenterologists and their nutritionist with weight loss and being around 20 lbs underweight. For the sake of making sure he doesn’t go into organ failure, the decision was made to put in a G-tube so that we have a way to get the necessary calories and nutrition into him. (I’ve just distilled close to 4 months of testing and deliberation into a paragraph, so believe me when I say that this was not a minor decision.)
The plan. He was admitted to Seattle Children’s Hospital two weekends ago for nutrition prior to surgery with the plan that they would nourish him inpatient for a week prior to surgery. His gastroenterology MD was positive that an NG tube would be able to stay in and that they could *TOTALLY* get nutrition in that way. I disagreed and got overruled.
Let’s just say I was right and my precious sweetling removed the tube with both hands restrained. We got to stay for another day and a half while they tried to figure out a Plan B. Our attending physician finally looked at what I was getting into him by mouth and said, “Let’s just discharge him and let Jen do this at home.”
(And yes, his gastroenterologist MD did apologize to me. She is classy and I’m less cross with her now.)
Wednesday. Surgery was Wednesday morning and we ended up with a different surgeon than was planned. This is who we were supposed to have. This is who we ended up having because he had the space on his schedule. (For those who don’t want to click the links: We were supposed to have just an awesome general surgeon and ended up with THE FREAKING DIVISION CHIEF FOR TRANSPLANTATION WHO SPEAKS NATIONALLY AND INTERNATIONALLY AT BIG CONFERENCES doing Daniel’s minor procedure.)
Surgery went well (they let me come in and help with him while they were getting him to sleep so I have a lovely selfie of me all suited up!) and we settled into the post-surgery wing.
How things are going. My beastling is doing amazingly well and we started doing feeds through the tube yesterday. Yesterday’s nurse started explaining the process and how to do things to me. Today’s nurse is having me do the feeds after training this morning. I have one feed of mine under my belt and will be doing the rest of them with supervision until discharge. He isn’t showing signs of refeeding syndrome so we got to double the feed amount today. If he tolerates tomorrow’s upping, we’ll be discharged on Sunday. Otherwise, we’ll be discharged when we can do all of the feeds without him vomiting them up or having refeeding issues.
We have a bed sitter with us who is making sure he doesn’t remove his IV or the G-tube and he has been good… so far. He did almost have a situation today where he was connected to the feeding pump and he tried to get out of bed which would have taken some tubes out accidentally, but we prevented it.
“Things I love here” take #1 The staff is ALLLLLLLLLL about the kids and families. They support their families really well and have an entire resource center on the 7th floor with washers/dryers, computers, and just about anything parents need when being here.
The doctors and nurses do an amazing job of interacting with the kids. All the residents are here for pediatrics so they are all focused on learning how to work with the kids. Daniel is finally used to doctors again (my deepest thanks to his pediatrician Annalee Paul M.D. at Skagit Regional Clinics for getting him on better terms with doctors checking him out) but I’ve watched the residents talk to Daniel and tell him what they’re going to do before they do it. The nurses are awesome as well. They advocate for us to the doctors and have done a great job of helping me figure out how to work with Daniel’s G-tube and how to use the feeding pump.
“Things I love here” take #2. Security is serious here. EVERY person who walks through the door gets their state-sponsored ID scanned and a badge sticker made that identifies your reason for being there. (The hospital is a huge building with skybridges and one zone of it is the outpatient clinics. Because it is connected, people can get from one place to another and they need to make sure that only certain people can get to certain places.) Parents and caretakers who have inpatient kids have color-coded lanyards with their badge inside of it. If I’m outside Daniel’s room, my badge is required to be on. If I forget it, they will print me a new name badge sticker that is temporary until I get back to the room, but I have to have something identifying me.
It’s incredibly strict, but I love it because people can’t just walk in from the street.
“Things I love here” take #3. I’d be lying if I said I didn’t like having three Starbucks a short walk away. When we were inpatient a few weeks ago, the elevator to one of them was next to Daniel’s unit so I could walk down a short hallway and take the elevator down to the 24-hour one next to the ER. I have a little more of a walk to the closer one here, but I love being able to get my coffee fix without having to go outside or change out of my jammies!
For more Quick Takes, visit Kelly at This Ain’t The Lyceum.