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!

M is for Mmmmiserable Mmmmonday.

Trevor was up throughout the whole night. He was just so congested in his nose that he couldn’t breathe well. The running mucus kept tickling his face and making him upset. He woke up so many times, he might as well have been awake all night. Then at 5:30am, he was just up for the day.

Brendan had a decent night of sleep after a pretty rough evening and then he had a rough morning with LOTS of suctioning and coughing. I was so tired that I couldn’t even remember how to brush my teeth, and I was panicking about being alone with the two very clingy, needy, tired boys clobbering each other. I was very lucky that his night nurse was able to stay a bit late, and one of his day nurses came in on her day off to help out.

Trevor went down for a nap at 9:45am and slept until noon. I was so grateful for a short break to rest my head. He woke up just as Brendan was going down for his nap, so he got to have a “picnic” lunch in our big bed while he watched Curious George.

He helped me open a million game pieces for the grocery store’s monopoly game.

This afternoon, Brendan had his quarterly appointment with his GI doctor. He had a great checkup. He gets his barium study tomorrow and then the doctor will decide his next plan, but big changes may be coming.

Brendan was measured at 35″ tall today! He is trying to catch up to Trevor! (Trevor is probably almost 37″ now!)

It was a wild day with a lot of ups and downs. We had special plans for today, but the boys were not 100% healthy. It is always a tough decision to make, whether to go ahead with things or stay home.

Since both boys were up by 6:30am, we decided to go for it. I will let Trevor tell you about it before I post the pictures! (please pardon the terrible camera work here, it was too cute to not post it)

It was about a 2.5hr road trip to get up to Northern AZ, specifically the Mogollon Rim. With Brendan’s recent illness, he was already having some need for a lot of extra suctioning. The road trip was very hard on him. He gets a little car sick as it is, he had several big bad throw ups on the road.
I felt terrible for him. 🙁

When we got there, he was so happy! He ran around and barely needed any suctioning in that nice clean fresh air. He climbed and explored. So did we make the right choice? All that suffering in order to have such a fun new experience? If Brendan were able to choose whether he would do it all again, I don’t know what he would say. I am glad that we went.

Trevor is still fighting off whatever bug he has, and today it finally turned into a thick runny nose that really bothered him. He forgot all about it once we got there too. The funniest part was that for all of that driving and the exploring and walking that we did, the best part of the whole day for the boys was playing in the back of Bill’s truck. They had a whole forest, and they wanted to run around in the truck bed.

We did have a nice walk

The boys picked up some pine cones

We got some cute pictures

We spread a picnic on the ground for lunch, but they wanted to be in the truck instead

A few hundred laps back and forth on the log…

We didn’t even make it off of the dirt road and they both were out cold.

The problem was that the way home was so steep and winding that their little heads just fell back and forth and they couldn’t get into a good position in their car seats. They took a really short nap.

We had a really difficult, crabby, overtired baby night. We really enjoyed a family outing like the kind we imagined when we talked about having kids, even though this had so much more extra preparation and work than we ever would have thought. I just hope both boys feel a lot better tomorrow.