It was another really rough night for Trevor. When he woke up at 10:30pm coughing and crying, I gave up and had Bill trade out Trevor’s glider rocker for the big comfy recliner. I pretty much spent the night in Trevor’s room holding him upright and helping him keep his nose wiped. At 2:30am, he woke up with that nasty croupy coughing and we spent 30 minutes sitting in the bathroom with the hot shower steaming everything up. The night seemed eternal, but was still over too quickly when Trevor wanted to be up for the day at 5:30am again.

After breakfast, we had to get rolling for Brendan’s GI study. I was not prepared for them to tell me that they will push the barium in to his G-tube and that we could be there 3-6hrs while they took a film every 20-40 minutes!! I thought it would be 2hrs max. I left Trevor at home with Bill while he was still also trying to work!

Brendan handled the whole thing like a champ. He did a good job in the waiting area. He was VERY upset during the xray process, but recovered quickly while we sat and waited for the next round.

The classic hospital gown

He did try to make an escape

The next news was from the doctor doing the study and it made me think I was about to need the suction machine to clean up my own barf. He said that Brendan’s g-tube wasn’t filling his stomach, it was pointed right in to his intestine. Also that the balloon/tube might be blocking his stomach from emptying.
My mind immediately went back to all the old troubles with the tube and all the hassle to get it fixed, and I worried that another surgery was about to be involved. But after some coaxing, the doctor told me (he can’t make the decision, Brendan’s actual GI will decide what to do) that the button might be too big and just swapping it back to the smaller one could fix the problem. I hope this is the case, but I have to wait to hear from the other doctor.
The good news was that there was no obvious sign of any problems like adhesions or constrictions. They will fully read the images before we know for sure, but all looks good.

During one of the breaks, I ran across the street to get a toy for Brendan and a snack for me. (Brendan stayed with his nurse) I was unprepared to be there for so long!
As soon as I walked back in, they told me that they got what they needed and that we could go!
FIGURES!

Brendan had a rough time with the whole thing, but was just a superstar about it all. I can’t tell you how many times I have had to strongarm Brendan and hold him still while someone did something painful or frightening to him. It never gets any easier.

Poor Trevor had a miserable day of coughing, plus he is just so depleted from lack of good sleep. From the sound of it, tonight will not be any better. We had oxygen refills today too!

And garbage truck!

To try to prevent the 5:30am wake up (when the sun is up), I ran out to JoAnn and got some blackout curtain liner. I very roughly sewed up some blackouts for Trevor’s window and Bill put them up. I sure hope it helps.

Brendan was super excited about his new toy. He is all in to robots now and loved this one that can walk all by itself. Of course, I had to get Brendan two robots as a reward, one for Brendan and one to give to Trevor to prevent Brendan from having to fight for it.

The saga continues… pulmonology checkup is on Thursday!