Another Day

Shaun:  The first order of business today was to figure out what was blocking Charlie's new feeding tube.  

They brought in the portable X-ray machine. . . 

. . . and within minutes we were looking at a kinked tube.  

An hour was spent by the ENT doctor trying without luck to get the kink out without removing the tube.  

 Finally, he removed the tube and replaced it, again with the aid of an endoscope.  Apparently these tubes are typically placed by the nurses.  However, concern over the possibility of doing damage to areas in his sinuses that were recent surgery sites brought the ENT in to do the procedure.  This time they checked the tube with another X-ray when they were done to make sure it was good.  

We were told early that if everything went well, Charlie would be discharged today.  He had to be able to take medications by mouth without throwing up, and he had to be able to get up and move around.  Nutrition through his feeding tube was arranged for home.  

Charlie wouldn't eat any breakfast despite our pleas.  Later, for a brief window he felt hungry and ordered pizza for lunch, but when it came he wouldn't eat. 

 He mustered up his courage and took all his medications by mouth so he could go home.  He held those all down.  He also got up and walked around a bit to show the nurses he would be ok at home.

Finally at 2:00 Charlie was discharged and from Primary Children's just in time to head over to to the Huntsman Cancer Institute for radiation.  After radiation - Free at Last!  

  

Kerry:  The kids and I met Brendan in Farmington when he returned from radiation.  Brendan had just eaten a crepe.  (He gave me his raspberries!)  This was the first time I had seen him since Tuesday evening, and I was surprised at just how thin he had gotten in 3 days.

 Brendan could hear the other kids playing and just had to go see what they were doing.  He didn't attempt the stairs, though.

 He settled on a game of pool with Lindsay, but only lasted about 10 minutes.

 The nurse showed up with the "food" to put into Brendan's feeding tube.  By this time, Brendan was completely worn out.

 Shaun and I were trained on how to use the pump for the feeding tube.

 The doctor's orders have us giving Brendan just 10 ml / hour to begin with and then giving more every 4 hours as he can tolerate it.  (That's as much as a preemie gets.)  So far he has kept all the food down and has not had any nausea.

 He's been on the nutrition for about 3 hours now and seems to be perking up just a little.  The pump will run overnight for 10 hours.

Brendan has tomorrow off of radiation, but has radiation again on Sunday.  (The radiation teams are working on Sunday so that everyone can have Thursday (Thanksgiving) through next Sunday off.)  The radiation doctors feel they need 4 days of radiation next week if they are taking 4 consecutive days off.  So he only has a small break this weekend.

Sarah: He just got a bit nauseas and he's definitely getting tired, so I think it's time to call it a day. Just another one of those days. Taking them one at a time.