I did a crappy job taking pictures today, they really were an afterthought. It was a much better morning keeping Trevor on his routine and going to the hospital around 11am. I met with the home equipment company representative and got a training on the ventilator, the suctions machines, new pulse-oximeter, and apnea monitor. Lots and lots of paperwork to do too, and the list of supplies that will be delivered was 2 pages long.

Brendan is still doing very well. He has his morning angry time, but he just needs company and attention and he gets through it with no problem.
I was so busy today with other people, I didn’t get to spend much awake time with him today, just watched him sleep. I did get plenty of smiles though.

Trevor will be so much happier when these trips to the hospital are done. He gets so overstimulated with all of the people and sounds, he doesn’t eat his bottles well when we are in Brendan’s room. I still am waiting for teeth to pop through any time.

I came home today feeling miserable and I hope I am not getting sick again. I had a severe body ache as if I had a high fever but my temperature was normal. A little ibuprofen helped but I am still not 100%.

Bill and I each have to spend 24hrs in Brendan’s room “nesting in” where we do all of his care with the nurses observing and answering questions. I am really not looking forward to this at all. I did it when he went home last time and I understand why they do it, but caring for him there and at home are still vastly different. I will probably do my nesting Friday-Saturday and then Bill will do his Saturday-Sunday.

Today was not exciting like yesterday. I was actually pretty stressed out. Trevor was cranky all morning and only was good for half of his physical therapy appointment. He couldn’t get his schedule going and didn’t want to eat his breakfast. He got better as the day went on, I think he was picking up on my mood a bit.

Brendan had a pretty good morning. But the RT that had him today totally didn’t understand his orders and did both of his off-vent sprints really close together. (10:30AM – 11:30AM, and then 1:30PM – 2:30PM). I think it was too much for him close together so he was coughing a lot and barfing up mucus. The order has been officially changed in record now that the sprints should be a minimum of eight hours apart. (Things that should be common sense have to be specifically written). She also dilly-dallied with his trach collar and let him just breathe room air for too long. I had to be insistant that she get it for him faster. I am so tired of meeting new people and having to repeat myself 80,000 times. After all this time, I walk in and still find him wrapped up in fleece blankets drenched in sweat. There is a sign on his headboard about his needs, but it doesn’t always get read. As we get closer to homecoming, I think my patience is wearing out.

We got all of his prescriptions dropped off today. We have the home equipment company bringing everything to the hospital tomorrow. All of his supplies have been ordered. Things are still moving.

Brendan was sleeping when I got there, hugging his favorite lion.

He had lots of smiles for me and Trevor, just none for the camera.

Trevor started out in an outfit that fit his mood.

He had a diaper overflow issue in the car, so he had to change.

This morning was a full day all by itself. The whole family spent the day with Brendan. Bill and I did our Trach CPR training.

Bill fixed this rocking chair that was falling apart, so he got to use it with Brendan today.

I only had my phone again for pictures, and the camera is acting up on it. Sorry about the quality. Brendan was in a good mood, they are serious about him not pulling that tube out again!

When we left the hospital, we got dinner at the place next door. Trevor did a fabulous job at the dinner table, as usual. He loved watching the traffic go by. It was nice to have a sit down meal with Bill and Trevor!

Tonight with the last of the daylight, we took Trevor to Bailey’s house for his first swimming experience! Gramma bought Trevor some swim trunks that he was going to grow out of if we did not use them soon!

I was worried that he was going to be too cold to like it. But the water was 82 degrees and it was 104 outside. He didn’t even flinch getting in!

Way bigger than the kitchen sink! I think he likes it!

He has his doggy paddle going full force. He just started kicking and kicking his little feet, it was too cute!! He’s a natural!

He doesn’t blow bubbles yet, we won’t let him drink the pool either!

Quinn is checking to see if he needs rescue

We walked home just in time for the full coverage of today’s solar eclipse. Our neighbor was outside with some of those sun viewing glasses he ordered, so I put them in front of the camera for a few pictures.