April 26… a week of milestones

Jack April 23Great news!  Jack’s speech therapist saw him swallow THREE TIMES yesterday.  She was using a lemon swab to stimulate him to swallow, and he performed beautifully!  Those of you who have been reading this for a while know that Jack’s ability to swallow is the element of Jack’s post-surgery recovery that is the most in doubt.  His ability to take food by mouth and to eventually use a Passey-Muir valve to speak are totally dependent on this factor.  I don’t, however, want to get our hopes up too high… he has a long way to go before he proves that he has regained the ability to protect his airway.  Just because he CAN swallow doesn’t mean that he IS swallowing in any kind of organized, predictable fashion.  As one of Jack’s pulmonologists told me today, it is possible that he will have to learn to swallow as an intentional activity when he old enough to be taught before he can really protect his airway adequately.  (I can see myself there with him, saying “Jack, now you have to swallow.”)  But if he CAN swallow… it opens many doors.  Let’s all do a happy dance!
Speaking of pulmonologists… Jack has made breathtaking progress this week from a respiratory standpoint.  He did so well on his HME trials that he can now remain on HME for several hours a day.  When he is not on HME, he is now on a “trach collar” which is a tube leading to a small water heater which humidifies the air that he breathes but which does not provide any other support.  So, as of now, Jack is TOTALLY OFF OF THE VENT during the daytime and is breathing entirely on his own!!  He still uses the vent at night, and will certainly need it if he comes down with any colds or other respiratory complications, but as of now, he is doing an incredible job at breathing without help.  More happy dancing!
Finally, and most importantly, Jack had his first post-surgical MRI to check for a reemergence of the tumor this week.  The MRI was clean.  No signs of any tumor, and even some signs of improvements within the structures of his brain.  (However, I haven’t had a conversation with Drs. Piatt or Walter about the specifics yet, so I don’t know exactly what has changed.)  It feels like a lead weight has been lifted off of my shoulders.  I find that the hardest thing for me to cope with is the uncertainty of that tumor ever coming back.  It’s something that wakes me up in the night in a cold sweat.
Just to keep things interesting, we’ve had a few bumps in the road with logistics this week.  On Monday, I came in to the hospital to find that the upper GI imaging study that had been planned was cancelled, and Jack was scheduled to get an NJ (a feeding tube running from nose to intestine) instead.  I was upset, seeing as an NJ had never been part of the conversation.  What had happened to the plan to do a GJ tube?  As it turns out, the G-tube that Jack has is too small to adequately thread an extension through to his intestine.  The whole plan had shifted to an NJ tube as an interim solution to the reflux, with the ultimate plan being something that is called a Nissen fundoplication procedure.  This procedure involves part of the stomach being wrapped around the base of the esophagus tube to prevent reflux.  John and I had a lot of questions about this, seeing as it is not reversible, but we were able to talk to Dr. Berman, who agreed that a Nissen was not a solution that we should rush towards.  Two days after Jack’s NJ tube was put in, he promptly pulled it out, and we asked that it not be re-inserted.  We are taking a “wait and see” approach now, hoping that positioning, a change in medicines, and in formula will reduce the problems we have seen with reflux.
I can’t imagine that any week could possibly top this one for progress.  It’s just great to have such nice things to report!
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16 thoughts on “April 26… a week of milestones

  1. Marlene

    Such wonderful news Meg! Real swallows, vent-free at night, and a clean MRI. We are so pleased to hear of Jack’s progress. Sending warm thoughts, love, and prayers to all .

  2. Sue Foster

    Meg, thank you for taking the time to share your good news. We are thinking about you and keeping your whole family in our prayers. Take good care of yourself!

  3. Bob Totz

    Happy Dances all around!
    So wonderful to hear about good progress!
    Thanks so much for the update.
    Hoping that Jack’s positioning, change in formula and meds will take care of the reflux,
    and praying for that now. Nice news on Divine Mercy Sunday!

      1. rudisell

        Definitely feeling like “a room without a roof!” I was going to post Pharrell’s Happy song but Marie beat me to it. What great news….makes my day!!

  4. Julia

    It’s so great to see such a positive set of developments. It’s so nice to see the shift toward more and more optimism.

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