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Thursday, August 4, 2011

The Whole Story...

A week ago, Cooper had a "button" put in.  He had stopped eating, wasn't gaining enough weight, etc. so we thought this would be the best solution.  It isn't permanent.  It can come out as soon as Cooper decides he wants to start eating again.  Here is what it looks like:


The little balloon on the end is inside of his stomach.  It is filled with water and keeps the tube in place.  The part that looks like what you blow a beach ball up with sits on the surface.  You take that plastic piece off, attach tube and syringe to it, and the food goes in.  We are still feeding him by mouth 5 times a day.  Everything that he doesn't eat goes into the tube.  Medicine, water, juice, etc. can also go in there.  

We got home from surgery on Saturday, and except for a little pain, he seemed good.  He went back to school Monday and Tuesday.  I picked him up a little early on Tuesday afternoon because he had a clinic appointment at the endocrine clinic.  We were in the waiting room and Cooper started looking like he was going to throw up (he literally has a "throw up" face; his lips get all big and his face gets really red).  He physically CAN'T throw up right now.  In addition to the g tube, he had a nissen (  He can't eat solid food (for 2 weeks), he can't throw up, and he can't reflux.  Unfortunately, I did not have the tube and syringe to feed him.  In addition to using the tube for feeding, you also attach the tube to the button about 20 minutes after he eats to burp him.  It creates a vacuum that pushed all the air out of his stomach.  Since I had no way to create that vacuum, I was screwed.  So I went to the back and explained what was happening.  A nurse started looking for the right type of syringe, while another nurse started getting his vitals.  His temperature at that point was 99.7, but it was his heart rate of 186 and his shallow breathing that was really worrying everyone.  Then the nurse came back with a syringe.  When I attached it to Cooper's button, gas and liquid literally exploded out of him.  It was really disgusting.  I called Cooper's pediatrician to see if I could just take him into clinic, but she was leaving and the clinic isn't really set up to handle respiratory issues.  So we went to the ER. 

By the time we got there, his temp was up to 101.4 and his heart was still racing.  We went straight into a room and immediately saw and attending (one of the benefits of Brad being a doctor).  They put him on oxygen to help him breathe and started trying to figure out what was going on.  They got an x-ray of his chest and abdomen.  They did a CBC to see if he had an infection.  Surgery came down to make sure that was ok.  But in the end, we were admitted because he couldn't get off of oxygen.  Something was going on in his lungs.

In December, when he had his first surgery, he left the hospital only to return 12 hours later with pneumonia.  He didn't have pneumonia this time, but they think he had some viral infection.  When he is intubated for surgery, his lungs are affected.  Since he already has lung issues, after surgery he is just that much more vulnerable to any infection that comes along.  And it kicks his cute little butt. He finally got all the way off of oxygen this morning at 6 a.m.  Usually, they make a patient be off of oxygen for 24 hours before they let them go home, but we came home today around four (another benefit of Brad being a doctor).  

Cooper already has a surgery scheduled for October.  We are going to be pro-active with this one.  We are going to do chest physical therapy starting 2 days before and continuing for a week after surgery.  Hopefully, we won't be back in the hospital with the same issues next time. 

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