It is a doctor-filled month for us, and today was the daily double. Trevor slept overnight without me having to get him, but he still had a nasty deep cough, thick green nose and difficulty lying down. While Brendan’s nurse and I took Brendan to the pulmonologist, Bill took Trevor back to the pediatrician. It is still just a really bad cold for Trevor, but he has an ear infection on the left side. He gets a course of pink bubblegum amoxicillin.

After driving the jeep around for a while this morning, Trevor crashed in to the tree and launched Brendan right out (he was OK!). Why don’t Powerwheels have seatbelts? 🙂
Then it was time for a car wash.

Brendan had a great checkup. We are not making any changes for the summer, he is going to continue with the trach/vent support for now, especially with the upcoming GI changes. He rolled in to the doctor like a rock star.

I always love being able to look at the xray images even if I don’t really know how to read them. In the second one, you can see his full trach tube, his g-tube button on the outside with the balloon inside, and all of his sutures and ties. It is obvious that there is still quite a bit of barium left from yesterday’s study.

I will explain more about the GI changes later. We did get the order for the doctor to change to a different button. Our supply company is sending one and I can swap it out as soon as it arrives. That hopefully will solve the positioning issue.

Let’s start with the happy news. Until 11pm last night, I was sitting in Trevor’s bed, trying to comfort him, and watching “Robocar Poli” (a Korean cartoon, we couldn’t understand a single word, but Trevor LOVES it). But once I was able to put him down, I did not have to go in to his room again until 7am!
We went for a nice 3 mile bike ride while it was still cool outside. He got to see a giant excavator up close, and along the canal there was a family of ducks in the dirt. The four baby ducks waddled right up to the bike and quacked at him. It was awesome and of course I didn’t even have my phone camera on me.

The rest of the morning was a challenge. I had some annoying phone calls, Brendan had therapy, and I had the biggest mountain of laundry I have had in a while. Procrastination while ill pays off in heaps.
I pulled Trevor’s fresh clean bedding out of the dryer and made his bed right before rocking and putting him in it. He was so tired and went right to sleep. 15 minutes later he is calling “Daddy!?” which is odd..
I go in to his room and he had thrown up all over his pillows.
His mucus is so thick and his cough so hard, it just made him lose his lunch. Once everything was clean, he was not going to nap.

The rest of the day was so difficult. Trevor was quite a little mess. He just was dumping, crashing, running, crying, and making things as hard as possible. He would do things like walking up to the bookshelf and just sweeping everything off in one crash to the floor. He tipped a high chair over in anger. He tried to yank the curtains down in the living room. He just felt so bad, he must have been so frustrated. I gave him a long bath this afternoon just to help him get a grip.
(Then Brendan decided that he would have a go at trying to pull the drapes down when he got mad. He loves to copy his brother’s behavior.)

I tried feeding Trevor some chicken noodle soup for dinner. He liked his “spoon” but did not like soup.

Brendan was licking salsa off of a fork and watching his favorite Baby Einstein video. He seems to be feeling better today.

I sure hope everything is better tomorrow.

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!