Wednesday, May 20, 2009
I am ecstatic to announce that Mikan has been ventilator-free for 48 hours now! This is the first time Mikan hasn't needed breathing support in almost 15 months (his entire life). Last night he didn't even drop his sats. We saw the pulmonologist today, and he said he wanted a blood gas done because he "wasn't as comfortable" as I was. He didn't really have a reason, he just wanted to be sure that Mikan was doing ok on his own. He wants the blood gas to be done in the home so we don't have to drag Mikan to the hospital, but I'm not sure if our insurance pays for this. The Dr. didn't seem to think it would be a problem. He is also trying to find a medical supply place to order an oximeter with respiratory leads that records Mikan's performance overnight (heart rate, biox, respiratory rate). In the meantime, we are allowed to keep him off the vent as long as he appears comfortable. It is liberating being able to leave the house without the ventilator.
Monday night, in the middle of his feeding, Mikan pulled out his g-tube (the balloon had deflated). He immediately began screaming and formula and stomach juices spewed everywhere. I've had to replace the g-tube in an emergency situation before, but this time, Mikan had grown much bigger and stronger, and no one else was home. I tried to put a new one back in, but he kept bearing down and scrunching his stomach up so the hole was smaller, all the while wailing because of the pain. When blood started seeping from the stoma, I asked myself, "Do I call 911?" Then I had to remind myself that "No, this was not a 911 emergency and I am totally capable of taking care of this on my own." I ended up calling my trusty nurse friend Rhonda who lives close by and she ran over to help. However, I was able to insert it before she arrived though (using one arm to hold down both his arms and legs...pretty tricky), and she helped me clean up the mess. The next day my home care nurse informed me that I put in the wrong size. Whoops (heat of the moment). So we had to put him through the trauma of another change. Bad mother.
Although Mikan still doesn't sit up on his own, he has made progress rolling from a hands and knees position and rocking back and forth on his hands and knees. He'll take off one of these days.
Posted by John and Jenna Gensic at 3:39 PM