My reserves are running low so my brain isn’t firing on all cylinders. If my sentences don’t make any sense, that is why! I am missing Bill and Trevor. They came to the hospital for a short time this afternoon but it was a crazy Brendan time so I didn’t even get to enjoy their company. I couldn’t hug my Li’l T because I was soaked in stinky vomit.

Brendan had a decent night and slept a lot of hours. The ventilator is starting to work for him again so he is able to rest. He woke up feeling a little recharged this morning and had some alert play time. He thought the first thing he would do was climb up and investigate the bright colorful screen and all the buttons and beeps.

Then he noticed the IV pole and hanging bags of liquids and that seemed fun.

He must have had a big appetite with all the work he is doing to breathe!

He doesn’t need the nurses here, he is going to draw up his own meds!

I made a mention of the flytrap couch last night and here it is. The back cushions are very heavy, completely rigid “flaps” that flap up to reveal a wider bed to sleep on, and flapped down, they make an awkward backrest.

The problem is that they are already worn out and the hinge has given up the ability to stay flapped up. So I put them up and I have about 17 seconds to get situated before the bed begins the digestive process.

We won’t even talk about how LOUD Brendan’s crib is to put the side up and down.

I was very encouraged by Brendan’s mood and activity this morning but it wore out by about noon and his exhaustion kicked in again. He has no strength to stay awake, and he coughs and coughs and it makes him throw up. We had a very rough afternoon just trying to make him comfortable to help him try to sleep. It is very exhausting and frustrating. The staff here has taken a “hands off, mom knows what she is doing in there” approach and I don’t get much help when I really could use it.

I feel bad that I was such a mess when Trevor came, I didn’t even get to snap a single picture of my awesome little t-man. He was looking super cute today, Daddy has done a great job of dressing him so far and his juice cup even coordinated with his shirt. Gramma would be proud!
This is no place for Trevor to be, he wants to get down and get in to everything so Bill took him home quickly.
Both of Brendan’s home night nurses came to visit tonight and I thoroughly enjoyed having some non-Brendan-care time, a shower, and some good adult company.

As much of a struggle and frustration as it was this afternoon with Brendan being so sick, it still is improvement over yesterday and that is what counts. Instead of 10L of oxygen at night, he is at 7L. His heart rate is lower. His sats are slightly higher. We are moving in the right direction. The medical team here knows that Brendan is in good hands at home and they want to get Brendan there asap. His oxygen requirements on all of his breathing aids needs to be down to 4L so that our home equipment can handle it. He had no fevers today.

The last positive thing to take away from this experience is the amusement I get from watching heads snap in a double take as some of the old crew sees Brendan and exclaims “Whoa, he looks great! He is so big!!”.