We continue to be able to report that there is nothing but good news on the Kyle front! He is talking, eating chicken nuggets and french fries, emailing friends, doing REMARKABLE in physical therapy, helping to dress himself....it's just amazing the progress he has made in the past few days.

He has been moved to a new room and is now in "rehab" status, no longer inpatient acute care. So, the clock ticks from this moment on and we start to see the light of him coming home soon! His medical team is in the process in the next 3 days of compiling all of Kyle's goals and the time frame to reach those goals. We will meet with them next week to review his progress and then determine the amount of time he will remain at KCRC. He will now be working in rehab for about 5-6 hours a day...very busy boy!! His lungs are clear, he's tolerating the food - in small quantities and somewhat bland items for now, no infections - his medical team is amazed at the difference and this really stems from having that tube inserted into his PEG feeding tube that allowed them to increase his nutrition formula every day and gives him the energy he's needed to progress further. He is gaining strength and is working hard on transfers from a wheelchair to the bed and a bench. Everyone is very proud of him and his determination to get work hard and get home!

Next step will be another rehab program in Fisherville, VA, where he will sharpen his ADL (activities of daily living) skills and enter into a Vocational Rehab program. They will work very closely with him to recapture the skills he needs to perform certain job duties and working in any sort of office/job atmosphere. We'll know more about that program soon. He will probably come home for a short period of time before he goes in to that program.

Keep those good thoughts and prayers for strength coming! They are working and he's getting stronger every day!

KYLE IS OFF THE VENTILATOR!!! This is the best news we've received in 2 months! He is breathing well on his own and they will monitor him for nighttime breathing to make sure he doesn't need to be on a C-Pap machine (a setting that just forces some air into his lungs).

This new development will certainly help his rehabilitation plan and his outlook. Next, we just wait for that halo to be removed the first week of November which will make all the difference in the world.

They are starting a plan to begin feeding him solid food as well! Planning is under way for him to probably be switched over to the Rehabilitation side now that alot of his chronic conditions are being resolved. We'll know more tomorrow!

Thanks everyone for your prayers and notes of encouragement! They are really working!!!

Not a bad couple of days for Kyle! He appears to be handling his feedings really well - now up to 80cc's an hour!No nausea either. This will mean he will stronger more naturally and faster!
This afternoon, he had bout of very low blood pressure, but they were able to get it back to normal after about 2 hours and plenty of IV fluids. He's been complaining of nasty headache, so no PT today, just Occupational Therapy.

The C-diff appears to be on the way out - yeah!! - so we'll see when the isolation mode will be lifted. It appears to be about 2 weeks until they will have a more set plan for taking him off the vent..we'll follow closely.

Thanks everyone and we hope that those of you in the Northern VA area will be able to make the special evening of music and conversation at the University Cafe, Oct. 17th. Diane, Adam, Barb and Carol have arranged for DOZENS of raffle items and silent auction items, not to mention the wonderful music lined up! We can't wait to see all Kyle's friends and gather for a great evening. For those of you who can't make it, we will miss seeing you in person, but you will be there in spirit.

More later!!

Kyle continues to make pretty good progress! Had a little setback yesterday with an upset stomach during physical therapy, but he was actually able to drink a little ginger ale yesterday! He tolerated it well and he indicated it helped his stomach! They also placed the valve in his trache tube that allows him to breathe air in through the trache and them he has to breath out of him mouth, allowing air to cross over his vocal cords and he's able to speak! He tolerated the valve for about 5 minutes - they will progressively leave it in longer each day. His throat got a little sore and the breathing in was a tad bit uncomfortable, but that's to be expected. They will continue that routine each day, allowing him to get used to it more.

He continues his therapy routine each day, getting stronger and progressing in learning new ways of getting around and transferring. His Physical Therapist, Marc tells us he is a very instinctive person and seems to know the natural way of moving around from wheelchair to PT mat. Kyle is embracing his therapy in a positive way, which makes it more probably that Kyle will reach all the goals that will be set for him while in rehab!

We should know more soon about a timeline regarding his stay in the acute care setting and moving to a rehabilitation status. Also, his medical team will update us with a timeline to wean him off the vent!

More soon!

Just sitting here with Kyle who is having a really good day. Was on the PT mat this morning for over 1 hour and did great. He is on limited ventilator support, feeding amount has been increased to 20cc per hour and seems to be tolerating a little better. He's texting away this afternoon, watching the Food channel - his two favorite things.

They've decided to keep his halo on for 5 more weeks, the full 3 months. Better to be on safe side and not remove it. So he'll skip the CT scan next week and just continue with x-rays to make sure all is well. His feeding tube insertion went really well and this will allow the amount of nutrition to increase. Hopefully mid-week, respiratory will insert a valve in his trach to allow him talk. This will be huge for Kyle as he has been trying to communicate better for weeks.

He's looking forward to a relaxing day tomorrow and starting his week again on Monday with PT, OT, Rec therapy and speech. He's going to be a busy boy!

He wanted us to thank everyone for the cards he's received. They are hanging on the wall reminding him every day of everyone that is thinking of him!

Well it's been a pretty good couple of days. Kyle's procedure to have the tube placed inside his feeding tube went well and his medical team will slowly increase the amount of feedings in the next few days. He continues to be fever free but still in isolation due to the C-diff infection. We are hoping that will just run it's course and run away soon!

His respiratory team continues to slowly begin to wean him off the vent and we should know soon a better time frame of when they think that will become a reality.

So Kyle will continue his PT, OT and Speech therapy while his medical team continues to treat the other chronic physical issues. Still no time set for when he will enter the "rehab" status full time. While keeping him in the acute care status works to his advantage in getting him healthy, we can't help be sad that he won't be home sooner than later. But we all take this one day at a time and leave his health up to the professionals who are doing such a great job with him at UVA. They are truly wonderful and doing a great job with Kyle.

Thanks again for sending all the cards to Kyle. He loves getting mail and it brightens up his room and his mood. He is very appreciative of all your thoughts and inspiration.

More soon...

Well, it's been a couple of really good days for Kyle. He's doing well in physical therapy and actually was sitting straight up by himself today! He has not had a fever in 5 days and while today he had an upset stomach, he seems to be tolerating the feedings - only 6 cc's an hour which is equivalent to about 1 teaspoon and 1/2. We did find out that a wisdom tooth on the right side of his jaw decided to pop through, so we are waiting to talk to the Dentist about pulling that out at some point. That may have attributed so some of that jaw pain he's been experiencing.

His breathing is good - breathing room air, keeping up his oxygen saturation levels and only has about 30% assistance with the pressure. They will continue to monitor this closely and begin to wean the assistance down in the next couple of weeks! His lungs seem to be clearing up nicely and his C-diff is probably on the way out, but he's still in "isolation" mode.

So many thanks for everyone that has been down to see him and he loves getting cards and letters. Here's the address if you'd like to drop him a note:

Kyle Preston
C/O KCRC
2270 Ivy Road
Charlottesville, VA 22903

More soon!