After staying up really late for the first half of the night shift with Brendan, I was able to sleep in while Gramma and Bill covered the boys this morning. Getting out of bed at 10:30am really throws off the day, it went by way too fast!
We had a slightly better Trevor today. Hopefully, he will continue to improve. He goes to see the doctor on Monday either way. He is definitely still dealing with a lot of pain and discomfort, but we had a lot more sweet, cute Trevor with smiling today.
Brendan was also in a great mood for a good part of the day. Saturdays are always bad because we make drug changes on Fridays. He is noticing the changes and cried more than usual. He ended up being held quite a bit today.

Since he was feeling happy, he got to try out something new!

We took his high chair out of the box and set it up for him, so he has a new place to sit during the day and play. For now, he got to look at a shiny red can!

Trevor says, “Wait a minute! That doesn’t look like peas or carrots!”

Trevor still has the jungle to himself for now.

Brendan cries until someone picks him up, and then he always flashes a big smile.

“I have this game mastered,” says Brendan

Through one of his rough spells, the only way to get Brendan comfortable was to sling him in a hammock like contraption and lay him on his side.

Trevor keeps working on his big boy sitting. When he feels good, he loves to play this way!

Brendan had a whirlwind day today and handled it so very well!

Trevor wished him luck this morning and we left the house

First stop was to see his GI surgeon. The doctor thought he looked great and is ready to “take down” the ileostomy! Brendan will get a contrast study of his colon first to make sure there is no damage or scarring that would prevent it from working properly once it is reconnected. Once he gets that test done, he will get a surgery date – possibly some time in July!!!
As excited as we are for this progress, I am nervous and not looking forward to more time spent in the hospital. He will go back to the CVICU for recovery and will have to spend 5-7 days there, possibly longer if he does not start pooping properly.

Next stop was the cardiology clinic for some blood work. We got the test results back this afternoon already and all of his numbers are excellent! His supplement schedule is being modified now that he has cut back on diuretics, so four doses of medication have been removed from his schedule.
He stopped his Prelone all together today after a very very slow wean. We will know in a few days how he will react, but so far his day has been excellent.

We had to breeze by the pharmacy at the hospital and get a big package of refills. Getting refills was a pleasant reminder that Brendan is going on being home for a month! When we got home, Brendan was exhausted and slept a good part of the day away. He was able to wake up, smile, and pick his tape.

Trevor had a very bad day. We are all worried about his little tummy. His pediatrician had us switch again to yet another formula. This new one is a super expensive hypoallergenic formula. The doctor is positive that it is a food intolerance, most likely to lactose. We just have to hope that he feels better soon.
He can’t go on like this

He is able to relax for short periods of time

He also can still have some smiley time. We want this sweet Trevor back full time.

Brendan still had energy for an hour and a half sprint. He misunderstood when we told him he was going to sprint. He thought he needed to run and run and run. He is working those legs so he can impress his physical therapist next week!

All that running wore him out!

Guess who is still here? It’s Gramma! She should have been on a plane last night, but Trevor whispered in her ear every night while she was rocking him and convinced her to extend her stay until July 1st.

Trevor is going to help with the blog. He had to get the camera ready for the big news.

Brendan has a TOOTH! His first tooth officially made it through the gums and is just a tiny sharp little bit of a tooth. He really enjoyed Gramma clicking on it with her finger. He was proud, I like how he kept looking at the camera! Big brother gets the first tooth, although Trevor is not far behind.

Trevor was overburdened with crabbiness today

Brendan had a great day of playing and sprinted off of the vent for an hour and fifty minutes.

He didn’t let the crabby get him

He had a full service wash today. Bubble bath, ostomy bag, all fresh face tape, trach tube change. He handled it like a superstar and was exhausted.

Because we took out a trach tube, I took some pictures so that you can see what it really looks like. I have had lots of questions about it. This blog is meant to help people understand what Brendan is dealing with so I am more than happy to explain things or answer questions, especially from the kids! No matter how silly it may seem. Bill and I (and Gramma too!) have been immersed in this and it is hard to remember when it wasn’t normal to have a cart full of medical supplies in the living room.

It is just a peg in a hole and the ties keep it in place. This tube part gets changed once a week for a fresh one.

This is the foamy strap that goes around his neck and attaches through those little holes with skinny pieces of velcro. These are disposable and get thrown away every day.