April 9… Logistics

Happy 10-month birthday to Jack and Sam!

I am writing this in a bit of a rush, so please forgive the pared-down prose…  The days feel short and compact now that I am back to work.  Sam has started day care and seems to love it (he started climbing stairs yesterday, as if to show us what “big kids” can do).  I have been occupied making calls to nursing agencies and nurse-provided day care agencies, while John has spoken to medical equipment delivery companies.  We’ve started the process of looking at strollers with vent trays so that Jack can have a bit more mobility.  The folks from occupational therapy should be by today to show me some strollers and see if they can fit Jack into one of them for his hospital stay.

On Friday, we will have our first meeting with the rehab team, which should give John and I a better sense of our timeline.  There is encouraging talk that Jack may only be here for another six weeks or so… but we’ll wait for a more definitive plan on Friday.

Unfortunately, Jack has been put on isolation “for the remainder of his stay”.  The bacteria that was found in his trach, stenotrophomonas, is not a common one to be found in kids like Jack, and although he has been treated for it, it can lie dormant for up to a year.  This can cause problems for other Nemouors patients who are immunologically compromised, or who have trachs.  The good news is that this is not the kind of bacteria that can easily cause infections in regular, healthy people without trachs.  So, while we can all safely hang out with Jack, Jack can’t leave his room or interact with other patients. He’s also still experiencing some setbacks with his feeds, which are frightening, but since his trach is still cuffed, I feel a certain measure of security.  Still, it’s a bummer.

Thankfully, those are the only real bummers right now.  Otherwise, Jack is “a rock star” during his therapy sessions, specifically with PT and OT.  Yesterday, John and I got to witness Jack doing some tummy time with Patty, his OT.  It is so hard for him to lift his head that he has not tolerated tummy time at all up to this point.  However, he stayed on his belly for almost a half hour, picked up his head numerous times and even used his arms to push himself up a bit.  It was amazing.  We whooped and hollered and cheered!  Jack gave us a big half-grin.  There hasn’t been much progress in terms of his speech therapy from what I can see, and there hasn’t been any signs of him regaining his ability to swallow.  All things in good time, I can only hope.

I hope to update again on Friday to let everyone know how the rehab team meeting went.  Until then, I’ve got to get busy following up on our Medicaid application….


3 thoughts on “April 9… Logistics

  1. Jill and Mike

    Climbing up stairs at 10 months – go Sam! And of course Jack is the rock star of baby rehab – he’s living up to his bounce back name and making incredible progress. Of course it seems slow to you, being in the thick of things, but to us it’s just remarkable that such a tiny being has recovered from so many assaults on his health in only a few weeks. He’s like the snowdrops in our yard – pushing up through frosty patches of earth, growing greener each day and now blooming despite flurries and bitter cold wind off the lake, warmed by the spring sun (like a child surrounded by the love of his family). Stay strong! Thanks for continuing your inspirational writing.

  2. Vicki and Fred Keogh

    6 weeks! Wow, very good news. Hopefully the news Friday will be equally encouraging. And he’s making such good progress. He’s a real fighter! We are really enjoying the pictures. You and your boys are so beautiful! It’s hard to believe they are 10 months old already. Good luck with all the paperwork and with all going on with Jack and Sam.

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