Today was a big day for Mattie. He had his first trach change, I got to hold him for a good long snuggle this morning, and he got moved back into his big boy bed as I was leaving to switch places with John for the day.
He’s doing really well on the ventilator, and they are working to find the best settings for him. The goal is to keep him at settings that will help me not to desaturate or drop his heart rate under stress.
He was awake and really observant this morning. He was craning his neck to see all of the medical staff as they surrounded us to doing their morning rounds. He’s quite a little social bug and loves to see people come around him.
Nothing in the world like having my boy back in my arms again. I know to some of you this whole “trach” thing may seem like such a huge deal (and it is I guess), but I cannot explain to you the peace that we have walking this out and how grateful we are that our sweet boy is breathing without stress.
Back in the Mattie Pad with a lot more gear. That is the ventilator on the left. The ventilator he will have at home will be MUCH smaller, but all the tubes will be the same.
This kid LOVES his boppy!
Everyone tells us that at some point, we won’t even see the “stuff” when we look at our boy. Honestly I can see how that is totally possible. It doesn’t scare me or even really bother me. I just want to dig in and learn all that is needed to care for my boy so that we can get him HOME. It is what it is. It’s just “stuff,” and as my dear friend Shelley told me “it’s just another hole.” My boy is my boy: sweet, miraculous, and strong. A pure delight to my heart.
As a student of art (in my former life), you learn that in good composition, lines lead you to the focal point of your work of art. So in my estimation, these tube are just leading lines, drawing your eye up into the master piece that is “Matthias Samuel Loux.” Seriously, once you get past the “lines” and let your gaze settle on that face for even a second, you just get stuck there basking in the beauty!
Mattie’s weighing in at 11 lbs 6 oz. Nearly certain most of that extra weight is packed into those juicy cheeks of his.