April 18… update

Happy Birthday to Jack’s Dad!  Here is my latest and greatest pic of the birthday boy and his “Booger” (who is giving his very best grin).

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(Does anyone else think Jack’s hair is starting to look more like Sam’s…?)

I wanted to post a few words to let everyone know what has happened since Jack’s aspiration event earlier this week. He is coughing up a lot more junk, but has not spiked any more fevers, and has shown no signs of respiratory distress so far.  Although it takes a few days for an infection to show up, I think that signs overall have been quite good.  Jack has been in great spirits; he continues to work very hard at his therapies and he gets a bit stronger every day.  This picture shows some of the progress- only a few weeks ago, he couldn’t lift his own head or chest up like this.

We did have an imaging study to look at what is going on with Jack’s tummy.  Although he has never had a history of reflux, we now know he has significant reflux up to the back of his throat, which helps explain all the spitting up.  The doctors have decided that a G-J tube is needed, which will run from the G-tube site in his tummy down into his intestine.  Thankfully, since his G-tube is already in place, Jack will not need a very invasive procedure to put in the G-J.  The procedure may happen as early as this weekend.  However, the interim solution has been to keep Jack sitting up pretty much all day long in a sling-like contraption in bed.

The upside to the G-J is that he will have less reflux and fewer feeding issues that could lead to other aspiration events.  The downside is that Jack will need to be connected to his feed all the time.  This is such a bummer to me, but doctors reminded me that the G-J is not forever.  If Jack regains his swallow to protect his airway, or if he grows out of his reflux, we can look forward to getting rid of this new accessory some day.

One positive piece of news at today’s team meeting is that we are all set to try HME trials starting tomorrow!  So, although the feeding tube and all its wires will be ever-present for a while, there may soon be times during the day that Jack can be off of the vent!  I greatly hope that he will do well with his first 5-15 minute HME trials over the next few days.  Fingers crossed…

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3 thoughts on “April 18… update

  1. Jill Gaffey

    Dear Meg, This is the first time I have seen Jack up in someone’s arms! I’m so proud of him! He has come such a long way and both he and Daddy look so happy. Happy Birthday John! Don’t let the new feeding tube get you down- yes it will be an inconvenience- but if it reduces the chances of aspiration it’s a good thing and we will pray that it won’t be needed for long. Miss all of you- Love, Aunt Jill

  2. Megan Oakleaf

    So happy to hear about the progress trying to get off the vent! That’s huge! But even happier to see this big smile on your little guy. One of the very cutest babies I’ve ever seen…

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