I swear it feels like I just wrote about doing a trach tube change yesterday. They get done once a week but the time sure does fly, it was that time again. In order to give an idea of what Brendan goes through, Bill decided to set up a time lapse camera. This whole process took about 32 minutes, but here you have it in 1 minute 17 seconds.
And yes, he gets a bath and trach maintenance on an ironing board. We set it up like a workstation near his crib because it allows us to do everything at a perfect height right near all of the supplies and we don’t have to move his equipment. It is a strong old board and it is nice and sturdy!
We will try to set up a camera again next week to catch a better view of the actual change. I think it will be fascinating for Brendan later to see what it was like.
Brendan and Trevor like to have conversations now at meal time.
And Trevor still likes to shake the rings for his brother.
Trevor got to try some pancake today
He is getting a little better with his pincer control
“Are you serious, where is the syrup??!”
Brendan got to play with pancake too. But he gets larger pieces. (no eating or biting occurred at all)
Trevor sings an emotional rock ballad to his pancake, fist clenched to hit the power note. He hopes to sell the song to The Bearded One’s band so that it can be a platinum hit.
The day wasn’t all smiles though. Poor Trevor is really struggling with those top two teeth. I am glad they are coming in at the same time. Add a little constipation to the battle and we had one very unhappy Trevor tonight. We are going to back off the solids/new foods again for a bit and let his tummy settle. Good thing we have ice cubes.
A little ibuprofen,a bottle, and a bedtime story with Daddy before bed helped him relax.
Brendan did 3hrs and 15 minutes of sprint today and did GREAT. Tomorrow he gets to try 4hrs. At the end of the week doing 4hrs, we get to call the pulmonologist for the next steps!
What a fast trach change that was! I have seen the whole thing in real time, and it is much scarier. You do a great job with something many people would never even attempt.
What a sad face and big tears on Trevor…poor little guy. I hope those teeth pop through soon.
Brendan is doing great with his sprints.
I hope your weekend wasn’t too bad with no nurse. You must be exhausted.
Cute pictures of the boys, as usual. Give them big hugs and kisses from Gramma.
Thanks for sharing the trach change. We take so many things for granted and it helps to get an eye-opener now and then of what others are dealing with. You do a remarkable job and I can tell it is not just because “you have to”…there is real love and tenderness that shines through your pictures/blog. These boys have amazing parents (and an amazing gramma~ LOL) and I look forward to reading more and vicariously enjoying their growing up.
Well, pop music stars keep getting younger and younger, so maybe babies belting out power ballads is the wave of the future. Li’l B is already his number one fan, hanging on every note.
I also like the back-and-forth sequencing of the “conversation” pics. Very cinematic. You have a career in film editing waiting for you, once Trevor’s music takes off and supports the family.
Great job on the sprint, Brendan! Good luck with 4 hours today!
I also think you are a wonderful mother!!! I agree that you can tell by your writings how much you love your boys. Bill and Grandma are great too!! I love the pic of the two boys grandma took of both boys laughing. The boys are growing so fast!!
Erma