Week 28 – Day 4

May the 4th be with you, nerds.

Aunt Shannon got an extra full day of Crankopotamus Trevor while I spent the day with Brendan. Trevor’s teething is moving in to high gear now, although there is still no visual evidence of teeth.
He just wants to chew on his washcloth during his bath.

We put wet burp-rags in the freezer for him to chew on too.

Brendan had a day filled with ups and downs. He started off with morning crankiness but then got in to a better mood. See something different in this picture? He has only half of a tube mustache! (the NAVA probe is what is missing)

Brendan thought that his cheek felt so fresh and happy without tape on it that he would pull out his feeding tube too!! The nurse was putting him on the scale and was trying to be careful about pulling on his trach and managing his vent tubing. It was a perfect distraction for his little pinchy fingers to go straight to his nose.
We don’t ever get to see naked Brendan face so I had to take a picture. He got to have his bath and get his face all cleaned up before the tube got put back in and re-taped.

The replacing of the feeding tube pushed Brendan over the edge. The nurses had trouble getting in place and he just had an epic meltdown. He got some Ativan and lots of comforting and he finally settled down.

He was on the Trilogy ventilator for 24hrs, but all day long he was working pretty hard. His sats were excellent, his color was good, but he was having to breathe fast and his heart rate was elevated. He got switched back to the big hospital vent in automode to allow him to rest. Going to Trilogy straight out was pretty ambitious, so in the morning they may try to switch him back and let him get used to it again.
The technology is just not as gentle in the home vent, even with the same settings. It is like going 90 miles an hour in a new luxury sports car versus a 15yr old family sedan. They both get you to the same place in the same amount of time, one is just a lot more fun and comfortable!!

New tube in place, expensive vent reattached, and ready for a nice evening of rest:

4 thoughts on “Week 28 – Day 4

  1. You are so right seeing Brendan’s face without all the tubes is a very happy view and he is sooooooooooo cute. Those cheeks and eyes what a charmer they will both be. All the IT grammas are still talking about Trevor and your very welcome visit. v

  2. Wow, you really are tired. May the 4th be you, always. Kayla says “nice” to that. Aunt Shannon better watch out for those budding teeth! Trevor might decide that she is worth tasting too! Brendan, I think I would meltdown a little too if I had finally succeeded in having a naked face (and successfully pulled a tube while the nurse was distracted). All that hard work! But there is always tomorrow, little one!

  3. Something is missing from the blog pictures besides Brendan’s tubes…where is Uncle Jon?
    It is SO nice to see Brendan without tubes, and he must have felt so “free”. He is looking so cute (and innocent as though someone else pulled out his feeding tube). Too bad it provoked a meltdown.
    Trevor was probably cranky because he misses his Gramma! Just kidding, I’m sure it’s his teeth. Even the sweetest babies don’t like those first little teeth popping through. He just wanted to get Aunt Shannon on her feet walking him around, and in the stroller. He has to train all of the newcomers! Even cranky, he is adorable!
    Lots of love to all of you, enjoy your time together and with the munchkins. Thank you, Aunt Holly, for your help sending some extra arms to AZ.
    Hugs a kisses to my babies…big and small,
    Gramma 🙂

  4. Great pictures today !
    First, a rare photo of the young Crankopotamus, in his natural habitat, and then, the detubulated face of an angel. 🙂 🙂 🙂
    Brendan, did you just pull that feeding tube out ? – – -no, I used the 4th. 🙂

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