Slight Delay

At the care team meeting yesterday, it was documented that Ray has officially emerged from the PTA phase.  This is great news for us and huge to his recovery.  With the announcement of this change at the meeting, it was agreed amongst the team that Ray should remain in Tampa for another month so that he can participate in more aggressive therapies prior to discharge.  Now that he is more aware, he will be able to take more advantage of the therapies provided.  While no exact details on these additional therapies are known at this point, we are anticipating Ray will be released to come home toward the end of January.  There will be another family meeting scheduled next month to go over the details of the care plan at greater length and from that we will have a better understanding of what to expect.

In addition to the PTA emergence, Ray has been able to tolerate ‘soft’ foods and no longer requires a pureed diet.  Liquids must remain honey-thick but it is likely that he will be able to consume thinner liquids soon.  Reducing the risk of silent aspiration caused by not swallowing food and liquids correctly will be an item of main focus for the care team over the next month.  If all goes well, Ray will be back to regular foods and liquids soon and not have any need for his feeding tube any longer.  No other significant changes have been observed.

Since our last family meeting we have been gearing up for Ray to come home before Christmas.  This was both exciting and a bit scary for us at the same time.  Now that he has come out of PTA, things should be easier for his care and his true recovery can now begin.  While it is a bummer that he will not be home for the holiday, we will make the best of the situation and be with him in Tampa instead.  Through the process of supporting Ray these past six months we have learned to be flexible and accept things as they come.  The change of plans will be for the better and we all need to show Ray our love and support on this journey.  Please continue to keep Ray in your thoughts and prayers over the holiday season.

Ray's friend Clint on a recent visit.

Ray’s friend Clint on a recent visit.

Thank you!

Team Ray

Homestretch

After meeting with the care team at the Tampa VA yesterday, it is looking very likely that Ray will be discharged home before Christmas.  The exact date is yet to be determined but this will be the primary focus for us and his care team over the next few weeks.  Ray has expressed on numerous occasions his desire to be home and all of the team at Tampa agrees it is now safe for that to occur.  There remain a few safety items that still need to be addressed for preparation of the home before a discharge can be possible.  We are confident that our concerns will be addressed by the care team prior to Ray’s return home.  Ray’s safety and comfort are our primary goals and we will do all that is possible to make that happen.

Recovery-wise there is not much of an update on Ray from our last post.  He is being assessed at the same levels as before and his progress remains slow and steady.  Trend data is showing a marked improvement in all areas over the past three months, yet his day-to-day recovery is slow.  Fluctuations in demeanor and ability are normal during PTA and need to be understood by those interacting with Ray.  The big news to happen soon is another swallow study where the therapists feel Ray can upgrade to a ‘nectar-thick’ diet.  This is great news as it means he is starting to tolerate thinner types of foods and liquids which may allow for his feeding tube removal.  We need energy focused on this to happen before discharge as it will make his home care easier to manage.

Once a firm discharge date is determined, Ray will be transferred home and his care will fall under the VA Home Transitional Care Team.  Schedules for therapies and medical assistance will be determined by the new team.  Details on his new care schedule, what supplies will be required, and any additional assistance he may need from the team may not be known until he is home.   We will need everyone’s positive energies in making this a smooth transition for Ray.  More details will follow closer to the eventual discharge to include visitation over the holiday season.

Ray Nov 17

Thank you!

Team Ray