I struggled with the decision at first. I really felt it was an indication of regression- that this was the start of a downward slide, but I soon realized that the tube was truly what Rowan needed in order for him to have a better life. He'd sometimes get really weak; either not enough water, increased seizures, or not enough food. Occasionally he decides he isn't hungry, so we can't get his medicines in him resulting in increased seizures.
So yeah... it's a good thing.
We got approved to have his surgery at Gillette Children's Hospital in St. Paul, MN- it took a bit of work to convince ND to let us have it there, but because he's on the Ketogenic Diet, we finally got it pushed through.
|Skinny Love prepping to go in for surgery|
|On his way|
|Getting ready for a snooze.|
Surgery went well for Rowie. The actual tube placement doesn't take that long. Here's our sweet boy in post-op:
Day after surgery, he did really well! Everyone was pretty surprised by that, actually. Day two, though, was a bit tougher. He started vomiting a lot, but didn't have anything in his stomach. Labs were done and they showed a couple of things that were easily remedied; he was in acidosis and his sodium levels were too high.
After a solid day of vomiting, suctioning and cleaning him over and over, he finally started to feel better.
And now a month post- surgery, he's doing really, really well! He has virtually no noticeable seizure activity and has gained weight. He seems happier and stronger. This was a really good decision-
Love you all.