NICU Diary Day 70

Friday, December 15, 2000

Oh what a week! Mommy and Daddy are exhausted from dealing with insurance issues, learning how to use all of my equipment, and struggling with the never-ending hospital politics.

Pediatric Surgery wanted to schedule my g-tube surgery for Thursday afternoon, without even asking. They entered all the pre-op orders without talking to us first. Mommy found out about it when she received a message on our answering machine asking for consent. The message didn't even specify what procedure. Mommy was particularly ticked about that!

We spoke with a pediatric surgeon yesterday to learn about g-tube placement, how the surgery is done, and what to expect. They aren't sure if I'll have the surgery before or after discharge. Recovery is typically 1 - 2 days, but it's probably more like 3 - 4 for me. I'll need increased oxygen and to be on the ventilator more during recovery, so it will be a set back. It also means more training for Mom & Dad!

Mommy and Daddy spent 3 ½ hours learning how to use my ventilator, oxygen generator/tanks, trach suctioning machine, and humidification machine yesterday. I have two ventilators, one is for my bedside and the other is portable. We will also have a huge oxygen generator that is noisy as well as tanks for when we are on the go. The humidification machine that provides moist and warm air for me to breathe is REALLY noisy and pretty big as well. I'm on that machine during the day when I’m not using the ventilator.

I also get two portable suctioning machines, which are about the size of a 6-pack and come in a carry bag. My feeding pump and equipment come from a different vendor, so Mommy and Daddy haven’t seen all that yet. Mommy and Daddy not only have to know how to use and assemble all of my equipment, they also have to know how and when to clean everything.

The three of us are staying at the hospital hotel this weekend from Friday evening through Sunday afternoon. Divot gets to stay at “Club Pet.” It should be a very interesting weekend, and we’ll be sure to let you know how it goes!