April 1, 2014… Movin’ Right Along!

Jack is doing better after a restful weekend.  He is now on a new round of antibiotics to fight a second trach infection.  Looks like doctors finally found the cause of the fevers, since he has been fever-free since these new meds were started.  The pulmonology team has decided to take a different approach with Jack after our aspiration scares last week.  Now, rather than uncuffing the trach, the plan is to work on Jack’s vent settings in order to wean him slowly off of vent support.  He has had a few c-pap trials, wherein the vent is providing pressure support, but not feeding him any breaths.  Jack has done extremely well with those trials, giving us reason to hope that he may not need to be on the vent 24 hours a day for very long.  In fact, he tolerated three whole hours of c-pap with flying colors this afternoon!

As I mentioned in previous posts, Jack will require an uncuffed trach if he is to learn to speak using his own voice.  But since his swallowing remains a major issue, the respiratory therapy team (and Jack’s parents, for what it’s worth) want to hold off for a bit longer on uncuffing him completely.  Working on the vent is a good way to progress, so I’m happy with that for now.  All things in their own good time.

This weekend, Jack got to get out of his room for the first time in weeks,  Although the field trip wasn’t extensive… he got to sit at a table only ten feet from his room…. he really seemed to enjoy the experience.  He could look out the window and hang out with Nana and Da and our dear friend Bob, a fantastic respiratory therapist who has been watching over Jack since PICU days.  Here’s Jack and his proud mama during his field trip.

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(I think Jack is reaching for Da’s nose.)  Jack also spent some time with Laurie and Andrew, our dear friends who sat with Jack so that John and I could get our taxes in order.

We had a mishap on Sunday morning when Jack’s feeding tube malfunctioned. The feeding tube is held in place on the inside of Jack’s tummy by a small balloon.  This balloon broke, and thankfully, Dr. Berman, who had initially placed Jack’s tube and his central line, was available to re-insert a tube for us.  Eventually, John and I will learn how to re-insert a tube ourselves if such a thing happens again.

Jack has reached two major milestones since my last update.  The central line has been removed!  Finally, one less accessory.  The dressing for that line covered up a quarter of Jack’s abdomen, so it’s much nicer to be able to bathe, kiss, and hug him without it.  Again, Dr. Berman to the rescue!  The second milestone… Jack is now considered medically stable enough to flip over to the rehab service!  Hooray!  This means that he will have longer, pre-scheduled visits with PT, OT and speech therapists each day.  Therapies will also be coordinated more tightly, and we will have weekly team meetings with the doctors and therapists.  Because he will have a set schedule, it will be easier for John and I to plan our weeks in advance, knowing when any medical procedures might be taking place, or when Jack is likely to be alone in his room, needing visitors, rather than engaging in therapies.

I am also hoping that the rehab doctors will be able to give us some sense of how long Jack will remain in the hospital.  So far, we are still without a timeline.  A few weeks?  A few months?  We have no sense of it yet.  I hope that is coming.

John and I changed our first trach together today (he took the old one out and I put a new one in). It went just fine, thankfully!

ImageSam is doing well also.  He is enjoying exploring the world through grocery trips, trips to the park… even trips to the doctor’s don’t seem to phase him.  He’s entered the phase in which children crab and fuss unless they are given unlimited freedom.  Freedom to eat the cat’s food, freedom to fling one’s body off of the couch, freedom to alligator-roll during a diaper change… why can’t parents just give intrepid explorers what they want?  I must admit, it’s hard to deny such a cute kid…

 

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12 thoughts on “April 1, 2014… Movin’ Right Along!

  1. Elizabeth Zalonski

    So happy to hear that you are getting some good news, it’s so amazing how far Jack has come! It seems like everyday he is making strides, he’s not called Bounce Back Jack for nothing!! Children are so resilient which is such a blessing. Hope tomorrow is a good day for all. Love, Betty

  2. jannmarie

    Meg, this is great news to read! It sounds like Jack is blossoming just as the spring flowers are outside. 🙂 Sam’s face looks like he is doing pretty good too! What cuties! Also, I am going to send you something via email – a contact that you might be interested in exploring. Thinking of everyone.

  3. Hi Meg! It’s Judith from H & S. So glad to see the pictures & videos – your boys are so cute! And I can tell that they both have oodles of a virtue I learned in karate as “indomitable spirit” : ) So thankful that Jack is doing well & kicking some diapered butt. If you ever need a babysitter for Sam, or anything else I can do to help, just let me know. Take care, & my family sends all of their best to you & your family.

    1. Also glad to help with laundry too – the laundry room is my “home office”, since I have to do 1-2 loads a day at my house!!! : )

  4. Sonya Wulff

    Thanks so much for the update…I love seeing the pictures of the little tigers. Your whole story, shared through your posts, has given me much more awareness of what kids and families are going through, and have been through, all over the world. With that deeper insight has come a profound respect for all involved. Love in action. With you, Sonya

  5. Kathy and Bryan

    Thanks for the update. We are in Iceland and it is so comforting to hear that all is going smoothly from across the miles!

  6. Jill Gaffey

    Dear Meg, So many prayers answered! We are so thrilled to hear of all of the progress Jack is making- and now that he will get more intensive rehab, he will make even faster gains! And it sounds like Sam is keeping you on your toes! What cuties they both are! Thanks for taking the time to post these updates when your life is SO busy! We love you all! Hope to see you soon! Aunt Jill and Uncle Bill

  7. rjfa53

    Meg- so much progress, so much good news in this posting. What a trooper Jack is proving to be! Thank you for sharing this latest update and pictures of both boys – they look great!
    Becky Anderson

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