More surgeries

We have had two fairly uneventful days- thank goodness!  Jack has remained stable and has rested.  John and I have had many more conversations with surgeons, therapists, doctors and social workers.  We watched some videos on trachea tube and feeding tube care, got to hold and examine an actual pediatric trach, and have been asking lots of questions.

We have also started to arrange for Jack’s care after the hospital.  Today I called up the insurance company to ask about in-home care benefits, and I heard myself say, very matter-of-factly, “I am calling because my son has significant neurological damage, and will require extensive nursing care”.  These past few weeks, I have occasionally found myself entertaining the subtle feeling that I am somehow living some other Meg’s life… That through some strange trick, I am in another dimension, inhabiting some other woman’s future, but certainly not my own.  Calling the insurance company today and stating the situation in those terms was a first step in turning away from denial and away from crisis mode.  It is time to begin turning toward our new normal.

There are still a few hurdles to overcome here in the hospital before we can truly leave crisis mode behind, however.  Jack will have surgery to insert the tracheal tube (“trach”) and the feeding tube (“GI tube”) at 1:30 tomorrow (Wednesday, March 5).  After the trach is placed, there is a 3-5 day healing period in which Jack will have to stay sedated.  After the ear-nose-throat doctors determine that Jack has healed adequately, we will be able to start weaning him from sedation, and …  finally… hold him again and get him moving.  I’m so excited for that day!

Jack’s hydrocephalus remains an unfortunate loose end as well.  Though Dr. Piatt has turned off Jack’s drain to “challenge” Jack’s brain to use the proper drainage channels (via the third ventriculostomy, as well as the original channels once blocked by the tumor), Jack’s pressure has remained elevated.  If the fluid was draining properly, the pressure should stabilize.  If the pressure does not stabilize on its own by next Monday or so, we will be looking at yet another surgery to place a shunt, a tube beneath the skin from Jack’s head down to his belly.  The hope is to avoid this, as any additional hardware can break down or invite infection.  (And let’s face it, Jack will have enough accessories after this without adding yet another!) Finally, there is still the central line which had been placed to facilitate chemo..which, thankfully, Jack will not need.  A small surgery will also be needed to remove that as well.

The good news is that, though scary to us, these surgeries are all quite routine compared to what Jack has already been through.  Though overwhelming to us now, a year from now I bet that the GI tube and even the trach and ventilator will be just another part of our lives.  I am grateful that these “accessories” may get Jack to the rehab phase of his journey all the quicker, too.  This unexpected future is scary, but we are looking forward to discovering our new normal soon.

As a post-script, I wanted to mention that Meghann has put together a meal drop-off calendar for our local friends who would like to help.  (Search for our last name to view our calendar, the password is bounceback) We currently have a lot of food thanks to so many of you, but in the coming weeks, we will absolutely welcome the help.


6 thoughts on “More surgeries

  1. Karen

    Hey, Meg! We are thinking of you guys today, sending love and positive vibes to y’all.

    I was chatting with one of my colleagues about GI tubes. *Both* of her kids have had them in the past — and have grown out of them. She had a good laugh about what a nuisance she thought it was to cook for her kids once the GI tubes were removed! (She’d also love to be your buddy if you’re ever looking for another mom who’s been through some big medical stuff.)

    Keep us updated! ❤

  2. George

    I can’t imagine what you’re going through right now, and I hardly know what to write. Watching your child roll into an operating room is always heart-wrenching. We’re all hoping that Jack makes it through this critical period, and that he continues to heal and “re-wire” his nerves. The brain is an amazing thing.

    I hope that once you get through this period, and he is settled enough to go home, that you will develop into a routine of care that becomes your “new normal.” While today it looks like a daunting amount of work, as it becomes more familiar, it won’t be quite as steep a hill that it appears to be today. (Although it will probably still be steep.)

    But what you have to look forward to is a very special relationship with a very special child. Your routine of care will actually develop into a very special kind of love, where each act of that special care becomes a loving moment. And as Sam gets older, he will realize that he has a very special twin brother.

    I think that we all have dreams for our children, and one of the biggest losses for parents in a situation like this is the reality that some of those dreams are now out of reach for your child. This can be heart-aching at times. But remember this: You will continue to be very proud of Jack as he grows up as he learns to do the best that he can do.

    Finally, medicine continues to progress, and who knows what treatments might be available to Jack in 5, 10, or 15 years. In fact, the first nerve grafts were announced last year, so perhaps this may be an option for Jack sometime in the future. One never knows what is in store…

  3. Megan Oakleaf

    Glad to hear that “crisis mode” may be winding down and you’re arming yourself for the next stage with lots of information. I love your can-do attitude, even if it feels pretty tentative right now.

    When it’s time, please let us know how us non-locals can help.

    In the meantime, we’ll keep you all, and especially Jack, in our thoughts and prayers. If sheer force of will has any effect, there will be lots of bouncing back on the horizon!

      1. Meghann

        Hi Megan! There are a group of ‘locals’ starting to explore more long-term ways to harness all the support folks are so kindly offering the Grotti / Gaffey family, and hope to have more options for the non-locals (and ‘locals’!) soon. Right now, anyone can help with gift cards to keep the Grotti’s fed and well-supplied — information can be found at the site Meg mentioned above.


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