Friday, August 28, 2009 2:38 PM

Friday, August 28, 2009 2:38 PM, EDT

Today was a very good day! Kyle was transferred back to the KCRC (Kluge Childrens Rehabilitat

ion Center) and is doing well! His pneumonia is still in his lungs, but 3 days at the UVA Med Center PICU seemed to do the trick. They took great care of him and got him to healthy enought (and fast) to be transferred back to KCRC.

He will stay in an acute care setting at KCRC and then transferred (still within the building) to a rehab setting in about 2 weeks. That's how long they think it will take for the pneumonia to clear up. Then, they have a 2-week plan to wean him off the ventilator. His rehab program will last about 2 months.

While he's in the acute "phase", they will still continue to do physical therapy, occupational therapy, recreational therapy and speech therapy but not at intensive as in a rehab setting.

Kyle would love to hear from all his friends and you can certainly send him cards and letters to the KCRC at:

Kyle Preston
C/O KCRC
2955 Ivy Road
Charlottesville, VA 22903

He doesn't have a phone in his room yet so cards and letters are the best way to reach him. He's glad to be out of ICU and back at KCRC and they are glad to have him back. We can't say enough about the wonderful staff and medical team there. He's in great hands!

More soon!

Wednesday, August 26, 2009 11:58 AM

Wednesday, August 26, 2009 11:58 AM, EDT

Sorry for the delay in postings. We've had a busy couple of days with ALOT going on.

Kyle's move to Kluge in Charlottesv

ille was very good. No problems with the transport and we were greeted by the outstanding staff. They were ready for him and got him settled fast and comfortably. That was Monday. His first day was primarily the staff getting to know him, talking to him about his stay and letting him know the process over the next few days. His schedule was set for Tuesday - Speech therapy at 9:00 am, PT at 9:30 am, school at 10:00 am, Occupational Therapy 10:30 to 11:30 and Recreational therapy from 11:30 to 12:00, then lunch and the schedule adjusted somewhat for the afternoon! He was ready to get started!

He slept Monday night soundly for the first time in weeks and Tuesday morning, felt very rested and ready for his busy day.

Physical therapy was very exciting as they lifted him out of the bed and into a wheelchair for the first time. He did great and really enjoyed sitting up for about 1 hour! His breathing even seemed to be easier in an upright position.

So after 3 hours of hard work, Kyle was pretty tired and they returned him back to the bed. The afternoon was not as planned though...

Kyle started feeling sick and was having some difficulty breathing. He seems to have aspirated some stomach acids and fluids into his lungs and his breathing went downhill from there. The wonderful Respiratory therapist that had been with him all day noticed his lips starting to turn a little blue and alerted the medical staff. That set the ball rolling to return Kyle to the ICU at the UVA main Medical Hospital. His oxygen level in his blood was dropping fast as well leading the medical team to believe that his lungs were filling up again...and they were right!

They transferred Kyle to the Pediatric ICU at the UVA Medical Center, just 1.5 miles from the Kluge Center. He arrived early last night where they took great care of him and instantly took x-rays to determine that he has aspiration pneumonia in his right lung. So.....

Kyle will remain in PICU for an undetermined amount of time while they treat him aggressively with antibiotics and watch the lungs very closely. He is breathing much easier today and even was able to eat half a popsicle which made him very happy! He's getting great care and are working very closely with him to make sure this doesn't turn into a bacterial pneumonia again.

This certainly pushes back his rehab schedule, but he's in good spirits knowing this is only temporary. He fully understands what's going on and is okay with it, and his stomach aches seem to have diminished today which makes him feel much better.

Thanks for all the phone calls and notes and hopefully now that things have calmed down a bit, we'll keep everyone updated more often. We are unsure of how long he will be be in PICU, probably at least until the weekend, but we'll be sure to let you all know!

More soon!

Sunday, August 23, 2009 10:58 PM

Sunday, August 23, 2009 10:58 PM, EDT

Tomorrow is the day we've been waiting for! After 22 full days in the ICU at Mary Washington Hospital, Kyle will be transferred to the Kluge Pediatric Rehabilitat

ion Hospital at UVA in Charlottesville, VA. His stay there will be between 8 and 12 weeks. The first major goal will be to wean him off the vent and then get him in to physical, occupational and speech therapy! He'll be working hard!

He's had a pretty good weekend in ICU...fever will periodically spike, but being controlled with Tylenol. He's been off the vent a couple of times and on his trach collar - where the vent is turned off and then a breathing mask is placed near his trach for oxygen. On Friday he did a magnificent 40 minutes of breathing on his own. Saturday, about 20 minutes. It really does tire him out! But he's a trooper and they haven't really had to set the vent settings to assist him to breath in the last 48 hours.

He's ready to start the next phase of his rehab and get to new settings and new friends. We have met some remarkable people and families of patients in the ICU and admire their stregnth and outlook. These will be friends that we will certainly stay in touch with in the future.

Will write more as Kyle gets transferred and settled at Kluge. Thank you all for your kind words and notes. We can't wait to get Kyle in front of a computer so he can read each and every one and see how much love and support everyone has given him.

Thanks and we'll update more on Monday from Charlottesville!

Friday, August 21, 2009 1:44 PM

Friday, August 21, 2009 1:44 PM, EDT

It's official! Kyle is headed to Charlottesv

ille at the Kluge Rehab Center at UVA for Rehab! He'll be moved Monday and will get started on his rehab program. He continues to improve with his breathing, while still on the vent....

more soon!

Wednesday, August 19, 2009 12:28 PM

Wednesday, August 19, 2009 12:28 PM, EDT

Kyle continues to work towards getting off the vent. He is undergoing some more tests today, primarily a bone scan, to make sure he's not fighting a bone infection. His temperature continues to spike during the day and night, and they are treating that appropriately. An Infectious Disease Doc has been added to his medical team to monitor any infections and make sure that all the meds are the right ones to treat him.

We had a meeting with the head of the trauma team and determined that Friday will be the day to plan if he gets sent to a facility with the vent or not. We have learned of a spinal cord injury rehab center at UVA in Charlottesville that will take him with the vent, and the medical team is leaning towards that program.

We'll let you know the test results and more update tonight.

Monday, August 17, 2009 5:35 PM

Monday, August 17, 2009 5:35 PM, EDT

Day 16 and we continue to work with Kyle's medical team for the next stage. Over the weekend, he did a GREAT job breathing without the ventilator for upwards of 2 hours at a time...then

, he'd take a break for a few hours and go for it again! Last night, he was one tired puppy and started having trouble getting a full breath. He worked so hard over the weekend on breathing on his own that his muscles and body just needed a rest. So they kept the vent on all night for him and then today, kept him on the vent as well. He's contracted a new strain of a virus that they are treating aggressivly with antibiotics, but today, he was really having a tough time breathing. They took some xrays and discovered the bottom right lung had collapsed. So back in with a bronchoscopy and cleared that up. He is resting comfortable now and will hopefully resume some breaks off the vent tomorrow.

We continue to try and wean off the ventilator, but these small obstacles keep occuring and hopefully tomorrow, we'll meet with his medical team to determine any next steps in relation to the weaning and rehab.

Thank you for ALL the calls, cards and visits - they are all so appreciated and we feel very blessed to have such wonderful people in our lives. Thank you for all the prayers as well and please continue to pray for a smooth recovery...

Sunday, August 16, 2009 10:40 AM

Sunday, August 16, 2009 10:40 AM, EDT

Kyle continues to make wonderful progress with his breathing! Yesterday he was able to go three rounds with no ventilator, all for more than 40 minutes at a time! His doctors are very pleased with this. Every day, the goal is to keep him off the vent longer than the day prior. They will continue to monitor his progress and regroup tomorrow, Monday, to determine how much more time they want to keep him to wean completely off the vent. The NRH has criteria that he has to meet in order to transfer him over, so they want to be sure all bases are covered.

He is still being treated for respiratory infection and it looks like there may be a new bacteria growing, so they are taking all precautions with a new antibiotic. He is much more alert, awake and communicati

ve and is working hard to get out of ICU and into rehab.

He really enjoys getting cards from friends and family, so thank you all for sending them. He really does appreciate everyone thinking of him!

More later....