It’s been a pretty crazy three days around our house. So let me tell you a little story about what I call, “When There Is One Too Many Holes”.
Once upon a time…
On Thursday past, Jess and I noticed that the area around Lily’s g-tube stoma was looking rather angry. It was red and raised and clearly something wasn’t right. We figured it was an infection of some sort, but since it was the beginning of a long weekend we couldn’t get in to see our paediatrician, so we headed down the ER at Sick Kids. The doctors were as quick as they could be, confirmed our suspicions and sent us home with a hefty antibiotic prescription.
All was fine until Friday afternoon when out of nowhere, the area around Lily’s g-tube, for lack of a better term, exploded and we were in a smelly, brown liquid, bleeding, pile of goop. We had some issues getting the bleeding to stop, so instead of taking our time and going back to Sick Kids, we headed to our closest ER, where after quite a wait (because you know, Friday nights at the ER are always fun), it was determined that an abscess had formed at the infection site and with the help of the antibiotic, it burst. We could see the spot the doctor was talking about and were happy to head for home to sleep in our own beds.
Then Saturday morning hit. We set Lily, who was in a great mood might I add, up to eat via her g-tube. It usually takes about an hour to run through the entire feed and as she was happy playing on her iPad and watching Peppa Pig, we were enjoying a nice lazy Saturday morning, relishing the thought that we didn’t have to go out because it was soon cold. Unfortunately, that was not to be. As soon as Lily’s feed was done, we noticed that she was soaked in formula. Now, this happens from time to time, sometimes she pulls the tube out while she’s eating and formula gets everywhere. So, we first checked that and were sad to see that the tube was still firmly in place. Then it hit is. The formula was pouring out of the hole on her g-tube site that the abscess had caused.
You know when you just know how something is going to turn out way before anyone else does? Well that was us. We bandaged the area up and headed back down to Sick Kids, because I may not know a lot, but I do know that if food is pouring out of a hole in your stomach, that’s one hole too many. Sadly, we were at the bottom of the triage list but eventually everyone came to the same conclusion that we did and Lily was admitted to Sick Kids last night. The main concern being that if she can’t eat by mouth and the g-tube feeds are pouring out of her, then obviously we’re going to have an issue keeping her hydrated and gaining weight (since we’re already concerned about her weight to begin with). After a not so restful night getting settled into our new room, and a handful of tests this morning to fully confirm the diagnosis, we are at the point where we need to keep Lily admitted and have her get all of her nutrition by IV (called TPN – Total Parental Nutrion). We don’t know if this will take just a few days – if we’re lucky – or, the more likely scenario, that it will take some time for this hole to close completely and she will have to have a more permanent PICC line instead of just the IV that she has in now.
After so many years without a hospital stay, I was quickly reminded of what an incredible trooper this kid is. Even at her worse, she was just so tired and overwhelmed but kept letting everyone poke and prod and pull the bandages on and off. She’s smiling and playing happily with her toys and her iPad (thank GOD for iPads!), and has been napping on and off after a couple of very long days.
So, if you can, keep Lily in your thoughts over the next few days while were figure out how long we’re going to be bunking down at our Home, Second Home, Sick Kids. Happy Valentine’s Day!