Thursday, June 4, 2015

Oh dear...

Our excitement over Jake's smaller nutriport feeding tube was short lived...The Nutriport was excellent in that it didn't make Jake's skin sore and it was small  and unobtrusive but...it has now malfunctioned twice - the balloon keeps bursting, and then the tube is falls out. When it comes out this is what Jake's belly looks like - and yes, that is milk in his stomach that you are seeing...




 The first Nutriport lasted 2 weeks to the day before falling out, and we were unable to reinsert it at home and then the doctors were unable to reinsert it at the Janeway.  Jake was throughly traumatized by all the pain from each attempt - it was unbearable.  He cried himself to sleep while still in the examination room, and then would shudder and cry each time I reached towards his belly after that.  Jake went 24 hours with a foley catheter in his stoma before the swelling went down enough that Dr. P was able to get it back in.  Now, 6 days later - the balloon burst again.  This time we were able to get the surgical g tube in place here at home with minimal pain for Jake.  Now, we have to buy new tubes to have on hand in chase the balloon inside the surgical tube also breaks.  We are not buying another Nutriport though - they run at $185 plus tax and that cannot be maintained at several changes each month.  We are considering trying the Mic Key although its very similar to the Nutriport, but for now we're just ordering one of the Mic G tubes (the long surgical one that Jake was first given when he got his G Tube), and waiting to hear whether our insurance company will help with the cost associated with the G Tube.  Jon called today to check on that and the company rep told him that she had no idea if G Tubes were covered, but none of the 3 kinds Jon  listed out for her were in their system.  That doesn't sound promising.  Jon was told to compose a letter, outlining the need for the G Tube and accessories, and enclose the prescription.  Upon reciept of that letter, the company will then determine if they can help us out with cost.  So, a answer is a little far away right now, but it is coming.  Jake had a good look at the broken feeding tubes today...




In the meantime, my priority is keeping Jake happy and pain free - and if he needs the larger tube to make this possible, then he'll keep the larger tube.  

Since my last post Jake has gained a pound! Really, he gained a pound and 5 ounces at one weigh in but a week later had lost the 5 ounces so it was exactly a pound of gain.  He hit 23 lbs 0 oz on the button.  Tomorrow is weigh in day again, I'm hoping for another gain, no matter how small!  

In even better news, we learned that Jake's pacemaker placement is intra abdominal - meaning that even though it looks like it could come through his skin, it is actually held in place by a pocket of muscle that was hollowed out of his stomach.  It was an enormous relief to read these words in an email from Jake's cardiologist.

Jake has been sick for a couple of weeks, and the cough seemed to worsen this week with the fever reappearing so he is now on antibiotics - but he has not been himself at all.  Here he is napping, while having a snack and sleeping off a temperature.  Poor little mite.


Note, that is the Nutriport in the picture above - Jake's current Mic - G feeding tube does not look like that!

Thank you so much to everyone who rallied around Jake last week he was going through the painful tube change process.  It is so appreciated, and such a comfort.  If anyone does not believe in the power of prayer, they need to spend a week or two in my life....


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