And for those who are new, a quick summary of what's up with Isaac: After months of going from doctor to doctor, we finally found out that he has a deletion on his ninth chromosome. As a result, this causes a wide spectrum of developmental delays and health problems. Isaac ultimately needed the g-tube because his oral aversion to feeding became so severe that each feeding was accompanied by tears, sometimes from both of us. His growth has also been extremely slow and as of a couple months ago he was the average weight of a six month old and the average length of a ten month old. He is now eighteen months old and almost weighs seventeen pounds, which is amazingly wonderful.
I was really scared before this surgery. I think mainly because he was coming home with something he didn't go into the hospital having. I was also worried and apprehensive about the care and maintenance of the tube and how as an active "toddler", he would tolerate the tube itself. Isaac happens to have a fairly intense personality and if he doesn't like something, he doesn't mind screaming for hours on end just to get his point across. So that's what I was anticipating. Thankfully, I can say that it has been a very easy adjustment, and honestly, I wish we'd opted for the surgery sooner.
For his feedings, Isaac sits in the high chair. Sometimes he watches a show, sometimes he plays with play doh or other random things. And sometimes, though not ideal, he scoots around the floor and I follow him around with the IV pole. Yep, I'm crazy.
This is what the pump looks like...it's all very self explanatory....
At this particular feeding he was watching Thomas and Friends, which is one of the most boring shows I've ever seen...
This is what the PEG tube looks like. In about seven weeks he'll get a mini button.
I tape it down just so that the extension doesn't bother him or pull on the tube site...
Administering Tylenol is super easy and no longer requires restraints (just kidding, we didn't really use restraints). Oh, and don't purchase red Tylenol, it's a bit disturbing and looks like blood.
Flushing the line is very important...don't worry, the red is just the leftover Tylenol. Your medical supply kit will come with syringes. They say you can use room temperature formula and water. I prefer to use lukewarm water and always heat his milk (aka formula, but I'm very sensitive to that word, more on that in another post). Cold water or formula can cause stomach cramping. Your "formula" should be delivered by your medical supply company, along with all of your IV bags.
Don't worry, it is completely normal for the tube to stick out one or two inches. Walter totally freaked out the other day when he saw it and refused to give Isaac a bath because he couldn't look at it. I'm also very good at cleaning the incision site on my own now. I decided Walter couldn't handle that either since he would sit there holding down Isaac's arms and I'd hear him taking deep breaths throughout the whole ordeal. Trust me, it's really not that bad.
Pretty simple! And you can barely tell he has it when his shirt is down! Because Isaac scoots, I tuck the port just above his diaper, that way he doesn't scoot and pull the tube out. Also, make sure you pinch the tube just below the port, so that stomach contents don't spill out. It's happened to me, and it's really gross.
And because you probably need a laugh after all of that...
Isaac was really excited to see Kate, his physical therapist. He did a great job and was in a good mood!
Working on climbing...
Hey Sierra I just wanted to warn you and for those who are going to use it as a resource. Be careful when your baby goes to the hospital because sometimes nurses will give them cold milk, and I realized this when an intern came in and tried to give it to him and I was helping him with the pump and felt the bag and it was cold, like freezing cold. Also watch the nurses if they give medicine that they don't put air in the extension. Just a couple of side notes!
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