This was one of those days that ended up being NOTHING like I expected as I rolled out of bed in the morning. Trevor got up at 6 this morning after a nice long night of sleeping. We had some tummy time and sitting up exercises in bed.

MONKEY SEE

MONKEY DO!

Gramma stayed home with Trevor, Bill had to work and then had a dental appointment. I left for the hospital in the morning to go spend time with Brendan.

Brendan was not as silly as yesterday, but it was determined that many of his issues now are related to withdrawal from all the drugs they are trying to wean to prep him to go home. He has a very tough road to travel to get all the drugs out of his system, it is going to take a long time and be uncomfortable at times.
I learned more about trach care and helped change his ties and get him all clean. We had a family meeting in the morning where I was able to voice a number of concerns about the next few weeks. Coming home is going to take a ton of preparation! I thought it was a pretty good day.

I try to give Brendan something to grab to keep him from constantly grabbing his tubes

Brendan went down to imaging this afternoon and had a barium swallow study. He passed, and now has the go ahead to start working on bottle feeding! When he got back from that, the occupational therapist was waiting to work with him. Originally OT and PT were going to work on how to get him comfortably on his belly. But with a tummy full of barium, they decided to skip that for the day and just did more sit up time.

But then… it was a race for people to get to me to tell me that the visitor restrictions had be lifted!! Every winter, the hospital has to go on lockdown and forbid children under 12 in order to prevent the spread of flu and RSV to fragile patients. Now that restrictions have been lifted, we still have to proceed with extreme caution, but Trevor is now able to visit his brother!!!!!! The last thing we need is for Trevor to get sick, and a simple respiratory infection like a cold would be very serious trouble for Brendan so we will still have to limit exposure.

I was very excited and called home so that as soon as Bill was done at the dentist, he could come and bring Gramma and Trevor too! Gramma hadn’t seen Brendan since Sunday! Trevor hadn’t seen Brendan since he left for his clinic appointment on January 31st and ended up getting admitted. Both boys were all about taking a nap, we had to wake them up to have some time together. They were tired but did so well!

Separately, it did not seem like there was much of a difference in color between the boys. But together, Brendan’s red/blue hue was really obvious. Especially when he has been sitting up.

Gramma and the boys!

We tried to get a nice group picture, but Brendan was getting tired and started giving the famous lip/chin sad face that gets him anything he wants with the nurses.

Brendan was done with sitting up time. Trevor was not sure what to make of his brother’s silent crying.

Lying in bed, much better!

Trevor thinks his brother is pretty cool and can’t wait for him to come home.

But then we told Trevor that he will have to share the kitchen sink and take turns with bath time!

I am exhausted tonight. I can’t tell you what an emotional day it has been. It is starting to sink in that Brendan may be out of the hospital soon. While I am not looking forward to handling the trach and vent on top of his other issues and the extra worry, we are confident that we will make him a hundred million times more comfortable and happy than he is in the hospital.

Brendan had another fantastic day today! I don’t want to say it, but I hope this means that he has turned a corner and will keep getting better. It is as if the respiratory team added some laughing gas to his ventilator. He thought everything was hilarious! He smiled at everyone and had a fairly relaxed day. He even tolerated his trach care like a big boy, and only had a couple of small fits.

Just a boy and his pet, chillin’

Look, more tubes to pull on!

Let’s get this party started!

Brendan got a visit from occupational therapy today and spent some time sitting up. The therapist was really pleased with his head strength and control. Not bad for a boy who has spent nine weeks trapped in bed.

While he was taking a nap, an Easter bunny came by and dropped off a basket full of goodies.

I got to hold Brendan for the first time in over three weeks! And then a pleasant surprise – the speech therapist came to do an evaluation and Brendan got 8ml of formula in a bottle. She was the speechless therapist when he drained the bottle like a pro. He has no aversion to eating, but the trick will be to see if he can keep food down. He is going for a barium swallow study tomorrow to make sure it is safe, and then we will proceed with training him to eat again.

Brendan is suddenly getting to act like a real baby, kicking and playing. He has also impressed his pulmonologist by already using the air leak around his trach to to coo and “talk”. I am so glad he can make some sounds!

This morning, Trevor tried out the boppy pillow that I was taking in for Brendan. He approves.

Big boy monkey t-shirt

Trevor really enjoys his gummy chew toy out of the fridge, it is nice and cold on his gums!

Oh no, brain freeze!!!

Trevor helped me download all of the pictures and videos from today to get them ready for the blog. He was really amused watching himself talking, but he must have said something offensive because he made himself cry!

Here’s a cute Trevor talking video, he likes the new gurgle sound.

Brendan wags a finger and says “Trevor, you are going to have to share the Gramma time”

Trevor says, “We’ll see, brother. We’ll see”

Brendan had another pretty good day, but it was such a busy day!

He had some time like this, I just want to scoop him up and run away with him when he feels like this

He had some time like this, although not as much as he should…but it is getting better!

He had tons of people in and out of his room all day, it is amazing he got in naps at all.

He got switched over to an LTV1000 ventilator today, which is the kind that we will use to bring him home. It works differently than the big expensive hospital ventilators, so it took some tweaking to get him settled in. The respiratory techs and intensivists and pulmonologist all had to come fiddle with it and put in their two cents. There was also a trach-tube inventory completed so that the seven extra pieces that were incorrect could be removed from the room.
Here he has some new tubing to go with the home vent. It will further simplify when the suction piece is removed.

Trevor was on the move again today! No naps for Trevor!!! Maybe 10 minute snoozes here and there.

Look at this face though, how can you be mad at him!!

I have a Trevor video but I will have to upload it for tomorrow’s blog. I am eager to go to bed!!