April 14… Discharge news!

Well, hi, everyone!

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We had our first rehab team meeting on Friday.  All therapists agree that Jack is doing well and making good progress every day.  Speech has not detected any swallow yet, though Jack is doing better at mimicking sounds such as clicks and pops, which he is happy to “converse” in for several minutes at a time.  It’s wonderful to see his urge to communicate.  His oral strength is improving every day, too.

Here’s the big news.  We have a timeline:  May 12th is the approximate day that Jack may be coming home, barring any major medical events or backslides.  Once home, we will have 24-hour nursing care in place, and will need to figure out transportation to and from Nemours’ outpatient rehab program (“CORP”) five days a week.  One logistical glitch we need to figure out before then is whether we can get the medical equipment delivery service provider that we want, which will require a fast change of my insurance plan.  Not sure if that will be possible, but I hope so.

We have a packed schedule here at Nemours until then.  Jack will continue to see PT, OT and Speech therapists seven days per week.  We will continue to work on weaning the vent to its lowest settings, and then beginning an HME trial (HME is a heat moisture exchange device.  Johns Hopkins defines an HME as “A humidifying filter that fits onto the end of the trach tube”.) The HME trial is one more step towards seeing if Jack can tolerate being off of the vent entirely for periods within the day.  Jack will probably stay on the vent at least at night for quite some time. But, since his lungs have stayed strong, there is reason to hope that he can have a few hours a day, at least, when he is untethered to a vent.

Jack’s new goals include working on his trunk and core strength, his neck and head control, and most importantly, encouraging him to try to regain a swallow.  I have come to believe that anything is possible.  Just a month ago, we weren’t sure if he would ever play again, if he would ever communicate.  Those things now seem much more within Jack’s grasp.  There is still a lot that we don’t know.  Will Jack ever have enough of an ability to cough, gag, and swallow that he can tolerate an uncuffed trach and a Passey-Muir valve?  Will he regain enough trunk control that he may be able to walk, crawl, roll, and sit up unassisted?  Will he be wheelchair bound?  There are many questions, but one thing we know.  Jack is coming home.  Not a year from now.  Soon.  Everything feels like a celebration in light of that news!

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2 thoughts on “April 14… Discharge news!

  1. Anne

    Your little boys are beautiful! Your positive attitude is so inspiring! May Jack continue to heal and be happy!

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