Wednesday, September 30, 2009

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'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!

Monday, September 28, 2009

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!!!

Wednesday, September 23, 2009

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!!

Tuesday, September 22, 2009

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!

Saturday, September 19, 2009

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!

Thursday, September 17, 2009

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...

Monday, September 14, 2009

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
2270 Ivy Road
Charlottesville, VA 22903

More soon!

Friday, September 11, 2009

Kyle asked that we post a couple of pictures of him in rehab so everyone can see the wonderful progress he is making. We'll add pictures as he continues to push forward!

The first two pictures is Kyle outside last Sunday in his wheelchair being visited by Sheena the therapy dog. Everyone knows Kyle loves animals and Sheena was certainly a hit! He got to feed her and visit with her and she'll be back to see him on Sundays!

The third picture is Kyle with his Occupational Therapist, Sue. She has been helping him with his activities of daily life and helps adapt some of the equipment he has like a laptop to use to communicate. He's now able to text on his cell phone and she works with him every day to help make daily living easier for him!
Doesn't he look great! He really likes being in the chair and going outside...nice change of pace for him. We'll post more soon!

Thursday, September 10, 2009

Well, today didn't go quite as planned. The procedure that was supposed to take place was a J-tube or Jejunostomy Feeding Tube was to be placed in his belly today. However, when we got to the UVA Medical Center, the MD performing the procedure said they couldn't do it. The PEG feeding tube he currently has should not be removed or altered for at least 6 weeks after it's been installed. It will be 4 weeks procedure. Kyle was already anaesthetised, so they went ahead and did some x-rays on his jaw, as per his Dentist's request to get his dental issues taken care of. And...while we were at the medical center, we discovered that Kyle has a C-Diff infection. What this is - Clostridium difficile - is a bacterium that causes upset stomachs, diarrhea and while everyone has it in their body, it becomes more pronounced in people who have just finished or are on long term antibiotics. So for a while, we have to wear gowns and gloves to make sure it's not carried out of the room and given to other patients. His medical team will closely monitor him and while other people can usually solve this issue by eating yogurt, he still can't have anything by we'll wait this one out.

He handled the drive and the moving really well and just took it easy for the rest of the day. Tomorrow, he will return to his regular schedule of physical therapy, occupational therapy, recreational therapy and speech therapy. He will also have some chest x-rays and neck x-rays done as the orthopedic team will be evaluting how much longer he will need to wear his halo! He is scheduled for a CT Scan in 2 weeks to determine if the bone in his neck has fused and if so, off comes the halo and on goes a hard collar. At the same time, they are begin working hard to wean him off the ventilator! Very exciting!!

Wednesday, September 9, 2009

Hi everyone! Hope you like Kyle's new site. MANY thanks to Robert Preston, Kyle's cousin, for putting this wonderful site together. This site will be updated daily to give everyone insite to his progress and to let everyone know about events happening to help benefit Kyle.

A trust fund has been set up for Kyle to help with his medical expenses and we are so appreciative of all of the gifts given to him. Since he can't quite talk yet with the trache in, we know he would say Thank you to everyone for thinking of him. Your kind thoughts and prayers and gifts are so appreciated and will certainly go to good use.

We are very excited to let you know about an evening of great music, great food and fun at the University Cafe in Downtown Fredericksburg on October 17th. We hope that you can join us to listen to the sounds of local Fredericksburg musicians, especially Adam Dawson, the man behind this mission.

We feel blessed to know the Dawson's, Diana, Jim and Adam for many years and we were lucky enough to have Adam work for us when we had the Snappy store for 2 years. He's like part of our family! He has been planning this special event for weeks and now and we're so excited and can't wait to go down and see everyone. We hope you'll mark your calendar and join us for this special evening. We should have a full line up of artists soon. University Cafe will be donating a portion of their receipts that evening to Kyle's Medical Fund as well as setting up raffles with prizes from local sponsors! We wish that Kyle could be with us that evening, but he'll still be here in Charlottesville, but certainly with us in spirit. Please keep an eye out for more info and we hope to see you there!! Many thanks to Diane and Adam for setting all this up. We don't know what we'd do without you!

Kyle had a good day today and was feeling much better. He had a good PT session and OT session and learned a new dice game in Rec Therapy. Tomorrow, he will have outpatient surgery at the UVA Medical Center and we'll be sure and update you when he's back at KCRC and settled in.

Thanks everyone and keep those prayers coming! They really do work!!!

Wednesday, September 9, 2009 11:42 AM

Wednesday, September 9, 2009 11:42 AM, EDT
Sorry for the delay's been a busy couple of days and we're just now able to give you an update.Monday was a pretty good day for Kyle. He had a little bit of physical therapy but most of the day, just rested. He's experiencing some major pain in his jaw from what we now know is an infected tooth that had a root canal last year and it appears the cap has come off. They are now treating him with antibiotics and the Dentist will evaluate him in 10 days and then schedule a time next week to cap that tooth again.Tuesday was not a particularly good day. Kyle woke up feeling sick and really didn't want to do anything. He's started running a fever again and his medical team is watching closely for any infection other than his tooth. The good news is that his chest xrays are looking good. His right lung is clearing up fast and he doesn't have to be suctioned as much these days! That's wonderful news and gets him closer to weaning him off that ventilator.Today he is feeling better and has already had physical therapy and occupational therapy and is getting ready for recreational therapy. Still running a low grade fever and his medical team is running some blood tests to see if they can pinpoint the cause of the fever.More soon!

Tuesday, September 8, 2009

Sunday, September 6, 2009 5:02 PM

Sunday, September 6, 2009 5:02 PM, EDT
What a great day! Kyle is feeling good and has had a busy day with LOTS of visitors and no upset stomach or breathing issues! He was treated with a visit from Aunt Pat, Uncle Nelson from Front Royal, and cousins Mike and John Southard came in from Alexandria along with the "greatMama-Nikki", who was so happy to see him in the wheelchair and sitting outside enjoying the day! While they were outside visiting, he was surprised by MORE visitors, his Uncle David, Aunt Audrey and Adelle, from Falls Church, cousin Ronnie and his wife Mary and their 1 year-old little man, Grady all the way up from Virginia Beach! Also with them was Glen and Erika and their son Matthew! Was a great treat to have ALL of you visit! Kyle enjoyed catching up with them and laughed and smiled more than he has in weeks! He thanks you all for coming to see him! Later this afternoon, his friend Meagan surprised him by driving all the way down from Waldorf! What a wonderful treat!His breathing is very good, no nausea issues today, and feels really good. He was up in his wheelchair for almost 4 hours today and did great! is medical team is thrilled that he was able to do so well today!Thanks again for all your notes! He hopes to get around to responding to everyone very soon and hopefully he will be able to begin updating his page as well! He wants to share his experience and rehabilitation with you all!Tomorrow will be a quiet day with a little Physical Therapy and then Tuesday, his medical team will begin the assessments that they have been trying to get done for a couple of weeks now. He is still scheduled for some same day surgical procedure to place a valve in his stomach to help get his food to bypass his stomach. This should eliminate the sickness, along with a change in the way they give him his medications.Kyle says thanks again to everyone that came to see him today! He hopes to see you all again soon! I think he can finally see some light at the end of the tunnel!

Saturday, September 5, 2009 3:06 PM

Saturday, September 5, 2009 3:06 PM, EDT
Kyle is doing well today! His lungs are good..still a little congested but doesn't have to be suctioned as much. He did some physical therapy this morning and went outside in his wheelchair. They are continuing to monitor his feeding and while he still feels nauseated, it's not as often.Today was the first day we were able to get a computer in front of Kyle and he has started reading all the wonderful comments that everyone has left him. They really bring a smile to his face. These words of encouragement really do make a difference.We also brought him a new cell phone today and I am happy to say that Kyle is TEXTING ONCE AGAIN!!! We are thrilled that he is able to start communicating with his friends again! This should prove to be great therapy for his hands and his heart! We'll try to get a note from him on page soon!Thanks everyone and we hope that you are having a safe and enjoyable holiday weekend.

Friday, September 4, 2009

Thursday, September 3, 2009 8:15 PM

Thursday, September 3, 2009 8:15 PM, EDT

Kyle did transfer back to the KCRC (Kluge Children's Rehabilitat
ion Center) and ran into some issues when returning. The nausea and upset stomach is a real issue and he did get sick and aspire more fluid into his right lung. His SAT numbers are still high, so they will keep him at the KCRC instead of transferring him back to ICU. His medical team at KCRC is in constant contact with the UVA PICU center to make sure everything is done to keep that under control.

As Gastrointestinal Specialist paid a visit to Kyle and has decided that a different method of feeding must occur. It is vital that Kyle get the nutrition he needs to keep up with his rehab, so they are working on the 2 procedures that will help him - one is the NJ tube, in which a tube is inserted into his nose and extends down to his small bowel. The other is a procedure that places a valve in his feeding tube opening to prevent the feedings to enter his stomach and go straight to the small bowel. His medical team will re-evaluate his situation in the morning and determine the next step.

One thing that was discovered was that Kyle seemed to be start feeling bad after receiving pain medication. So they have stopped giving him a certain type of pain medication and trying another to see if that was causing him some issues.

Kyle was also mentioning a fair amount of pain in his jaw, so a Dentist will be coming by tomorrow to look at his pearly whites and make sure they are all okay.

A lot happening, but he's glad to be back at KCRC and seems to be resting comfortably this evening. We'll let everyone know what happens tomorrow!

Wednesday, September 2, 2009 6:30 PM

Wednesday, September 2, 2009 6:30 PM, EDT

It's been a good day for Kyle. He's feeling pretty good today and the ventilator settings are low and he's breathing better! He'll be out of ICU tomorrow and going back to Kluge.

Thank you to EVERYONE for your phone calls, emails and cards...the
y mean so much to Kyle and to us. Your words of encouragement truly work and we are certain that all your prayers are being heard.

Thank you to Shelby at MyEyeDr here in Stafford for getting Kyle his glasses. She's a wonderful, giving person to help us out like that...thanks Shelby! We hope to visit you soon...and with Kyle!!!

Gary and I want to express our gratitude to our family and friends. Our cup runneth over with all the love and prayers for Kyle and for the rest of the family and please know that nothing goes un-noticed. We are praying for guidance every day, but like our new friends, the Sidewalk Prophets say in the most moving song I've ever heard:

"Be strong in the Lord
And never give up hope
You’re gonna do great things
I already know
God’s got His hand on You
So don’t live life in fear
Forgive and forget
But don’t forget why you’re here
Take your time and pray
These are the words I would say"

Thank you Dave for writting those will never know how much they really mean to us. I repeat these words several times a day and think of how this is so true of Kyle....he will do great things when this is all over!

Thank God for each day everyone and tell your kids and your loved ones that you love them every day!

Wednesday, September 2, 2009 8:18 AM

Wednesday, September 2, 2009 8:18 AM, EDT

Here's the latest!

Yesterday, the took more xrays and they revealed less congestion in that right lung! That's good news. Seems that the aggressive respiratory therapy is having some affect. The GI Specialist came to see him regarding the trouble he has tolerating the feedings. They are going to try a different way of giving him his medications - breaking them up and not giving them to him all at one time, etc. - and hopefully that will eliminate some of his discomfort. They will follow his progress and determine later if something different has to be done.

Last night, he slept well, even with all the all the interuptions of suctioning they did. The suctioning is definitely helping with his breathing, so the more they can get out of the lungs, the easier it is for him to breath. This morning his vent settings were lowered and he was breathing very well and over the machine! That's great news!

They will continue to monitor him in ICU and make the determination when he'll be ready to go back to the KCRC. Thanks to all of you that have tried to come and visit him the last couple of days. It's tough when he's in the ICU because while they need him to get his rest, it's important for him to see his friends.

Hopefully we'll know more as the morning progresses. Thanks everyone!

Tuesday, September 1, 2009 8:41 AM

Tuesday, September 1, 2009 8:41 AM, EDT

Kyle had a very restful night, with plenty of sleep with help of some sedation medication. Yesterday early evening was a tough time for him. His oxygen saturation levels dropped into the 50's which is dangerously low. So they helped his breathing by bagging him and forcing air into his throat, then where able to suction his lungs, excreting a very large amount of mucus and that seemed to help him breathe significantly better.

The afternoon x-rays showed that right lung was giving him trouble again and had partially collapsed. Since he has a tough time being able to cough, he depends on suction to remove fluids from his lungs. Alot of the fluid is lying in the bottom lobe of the right lung. So the amount they were able to get out yesterday will hopefully be significant.

He slept very well through the night and his saturation levels remained high...a good sign. They will do another x-ray this morning to compare with yesterday and if they feel there is still too much mucus in his lung, they will perform a brochoscopy to remove more out of his lung. They performed several bronch's at Mary Washington and he always was able to breathe well after them.

We'll update later today! Thanks everyone for your continued support! We sure do appreciate it!

Monday, August 31, 2009 12:05 PM,

Monday, August 31, 2009 12:05 PM, EDT

Just a quick update as of noon Aug 31st....Kyle is being transferred back to Pediatric Intensive Care at the UVA Medical Center. He is continuing to have issues with his oxygen saturation levels not rebounding and some issues with his nutrition/feeding tube. His stomach just can't tolerate the feeding drip.

As soon as they get him moved and stable, we'll know more!

Thanks everyone and keep those prayers coming!!

Sunday, August 30, 2009 3:55 PM

Sunday, August 30, 2009 3:55 PM, EDT

Kyle has had an okay day...had some issues with his oxygen saturation levels dropping so the medical team decided some chest x-ray
s were in order. They did show he has a bottom right lung lobe that has partially collapsed, but this has happened before and they will now treat the respiratory issues more aggressively to try and break up the mucus that is in that lung. He's not tolerating the feedings either and has asked to have the drip stopped. It makes him very nauseous and is still getting sick from the feedings.

They don't want to transfer him back to ICU, so they will work wtih the PICU staff over at the UVA Medical Center to develop a more aggressive treatment plan. The rest of this afternoon, they will try to keep him comfortable and resting quietly.

More tomorrow!

Saturday, August 29, 2009 10:30 AM

Saturday, August 29, 2009 10:30 AM, EDT

A weekend of rest...

Kyle continues to get a little better every day! He is feeling good today and his vitals are strong. He will rest this weekend with no physical therapy scheduled and his medical team will continue to treat him in an acute medical situation, helping with respiratory therapy to eliminate this new pneumonia. His breathing is good, he is tolerating the feedings much better but still struggles with getting a good nights rest. They will try some new medication tonight in hopes if him sleeping through the night and getting his much needed sleep!

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
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....

Friday, August 14, 2009 10:37 AM

Friday, August 14, 2009 10:37 AM, EDT

Finally some steps towards progress! Kyle continues to make good progress and gets stronger every day. We were able to watch yesterday as the physical therapists and occupationa
l therapists worked with him to sit him up on the side of the bed! It was wonderful just to see him sitting like that. He of course was supported by the PT's but we saw him moving his arms to help support himself and position himself as well! It was truly wonderful to see!

The status of his recovery is starting to finalize as the trauma team at Mary Washington want to keep him in ICU to wean him off the vent. They know him, can continue to work with him and his other injuries instead of moving him to a second stage facility in Washington, DC, to specifically wean him off the vent. We'd just like to prevent another move prior to sending him to an in-patient rehab center. We are arranging to move him to the National Rehabilitation Hospital in NW Washington, DC, one of the best facilities on the east coast! He'll have great care there.

He is much more alert and aware of his surroundings and is able to communicate a little better by mouthing words to us and somewhat whispering to us as well. He is even able to hold the suction tube himself in his right hand and suction out his mouth! It's so wonderful to see him doing these things for himself.

He continues to struggle with pneumonia and his lungs tend to fill up somewhat quickly, but his medical team has a plan in place to effectively wean him and get him ready for the next stage of his recovery.

Visitors are limited at this point as the most important thing he needs right now is quiet rest. His primary doctor, Dr. Roberts told Gary last night that he's amazed at how well Kyle breathes over the vent when he is quiet, calm and sleeping. That makes the weaning even better for him.

We have told him about all his wonderful friends that have come to see him these last two weeks and he smiled as we read down the list...he asked us to thank you all again!

Kyle will continue to work with his PT's and OT in strengthening his muscles. Just keep your fingers crossed they can get him off the vent..and soon!

Wednesday, August 12, 2009 4:34 PM

Wednesday, August 12, 2009 4:34 PM, EDT

Quick update...Kyle had a good physical therapy and occupational therapy session today. He is a little more alert and doing pretty well breathing over the ventilator this morning. He did have a CT scan and X-rays today, so he's wiped out now and the vent is helping him to breathe. CT Scan shows his spine is still wonderfully straight and X-rays revealed some filling up of fluid in his left lung...they've hopefully corrected that with a bronchoscopy today.

His wonderful trauma doctor that admitted him just after the accident has returned from vacation and we're thrilled. We have ruled out the Shepherd Center in Atlanta, so Dr. Roberts is asking for 24 hours to assess Kyle to see if they can wean him off the ventilator and then we send him to the National Rehabilitation Hospital in Washington, DC. If they feel they cannot wean him off the vent in 48 hours, we will move him to another specialty facility downtown then move him to NRH.

He's resting quietly now and getting some much needed rest....More later.....

Tuesday, August 11, 2009 9:21 PM

Tuesday, August 11, 2009 9:21 PM, EDT

Kyle had a pretty good day today. The tracheostomy was successful, feeding tube inserted and a couple of other little procedures - all done with no complications! The breathing tube is out of his mouth - thank goodness - and feeding tube gone from his nose and all vitals are stable. It will be a while before we'll hear his voice and right now it's very difficult for him to communicate with us, but we're learning his signals and trying to make him as comfortable as possible.

We had a meeting with a representative from the Shepherd Center in Atlanta, the facility that is first on our list to send him to. We'll know in the next 48 hours of his acceptance and then begin the process of transporting him down there.

His vitals are stable, breathing well on the new trach tube and now we want to get him out of there as fast as we can to begin the next phase of his recovery. He is more alert than in past days, due to the complete removal of sedation medication, but is kept comfortable on pain meds when he needs them. He needs to now get out of the bed more and into a rehab program, something we hope to have him working on by the beginning of the week.

Thank you for ALL the cards and letters and visitors and calls of support from family and friends. We tell Kyle all about the notes and cards he's received and will be sending them with him to Atlanta.

More tomorrow...

Monday, August 10, 2009 7:01 PM

Monday, August 10, 2009 7:01 PM, EDT

One step forward, two steps back. We had a meeting with Kyle's head trauma doctor and learned today that his respiratory issues are more severe than we thought and he will have to be sent to a rehabilitation facilty on a ventilator. This is so upsetting as we really wanted Kyle to be vent-free and ready for rehab. But his injuries are not allowing him to breathe on his own and so he will have to include respiratory rehab in his immediate future.

Tomorrow morning, he will get the tracheostomy and feeding tube. From there, he won't be at Mary Washington too much longer as he will be sent somewhere-still trying to determine where-to begin his longer road to recovery. He worked very hard today, breathing over the ventilator, had physical therapy and occupational therapy, but by 3:00, that poor kid was exhausted and they had to change the vent settings to help him breathe more. Of course, it will be easier to help begin the rehab process while on a trach rather than a breathing tube down his throat, but this will lengthen his time away from home and family and friends, something we really tried not to do.

Kyle is alert at times, showing his frustration with the breathing tube and trying so hard to communicate with us.

After he gets the trach and feeding tube, there is really nothing the hospital can do to further his recovery. They will of course monitor him and treat his issues - still has pneumonia - but they cannot do much more than that.

More tomorrow.....

Saturday, August 8, 2009 9:28 PM

Saturday, August 8, 2009 9:28 PM, EDT

Today seemed to be a calmer day. While Kyle is still on the ventilator, they have stopped the constant drip of pain meds and only give it to him when he needs it. He is able to communicate that he is in pain when asked, so the medical team takes care of giving him what he needs.

Looks like Monday the medical team will evaluate the trache option and possibly a different feeding tube. Right now, he has a feeding tube that is in his nose that bypasses his stomach. The new feeding tube will be much more effective and allow him to really get the nutrition he needs so much. Taking the nasal tube out soon will eliminate the possibility of sinusitis and other infections.

His white blood cell count is down - that's good news - and they are effectively treating his pneumonia. He was pretty alert this evening and had a lot of visitors, which we are so grateful for.

Each day seems to be something different, but today seemed to be a very calm day. They will keep him comfortable overnight and monitor him again tomorrow!

Thank you to everyone that has come to visit and have sent cards. We can't wait to show him all the names of everyone that have come to visit and tell you himself how much he appreciates your kindness.

More tomorrow!

Monday, August 10, 2009 6:33 AM

Monday, August 10, 2009 6:33 AM, EDT

Kyle remains stable, still with a fever and still intubated. We'll meet with his doctors this morning to discuss the next steps - trach, feeding tube and his pneumonia - and hopefully get him on the path to the next stage, which is getting him stable enough to get into the National Rehabilitat
ion Hospital. He receives pain meds when he needs it and still continues to try and get that tube out of his mouth! The nurses are very pleased with the strength in his arms when he tries to resist reaching for the breathing tube! He's a strong kid!

Kyle has received wonderful care from his nursing staff, Physical therapists, Occupational therapists, respitory therapist, physicians - he's still on the mend and getting better everyday. It just feels like it's taking a lifetime.

More tonight...and thanks again for ALL the kind words, visitors, and prayers.

Friday, August 7, 2009 2:57 PM

Friday, August 7, 2009 2:57 PM, EDT

It's been a roller coaster of a day. Kyle was doing well enough this morning tha
t the medical team decided to go ahead and remove the breathing tube from Kyle's throat. So they removed the tube about 11 am and he was doing pretty well breathing on his own. But the pneumonia has created quite a bit of congestion and his chest wall muscles just aren't quite strong enough to allow him to breathe hard enough to give him the volume he needs. He did a GREAT job couging up alot of "stuff", but he was working so hard to do that - it just tired him out. So....he is back on the ventilator again.

His medical team thinks the next step will be a tracheostomy - making a small incision in his throat and placing a small ring inside his neck and then connect the breathing tube there. This will allow him to work his muscles in his chest - they disconnect the tube, he can breathe on his own and then put the tube back to help him breathe. We just have to be sure that the incision from his neck surgery has healed enough to put the trach in...we'll know more soon.

His myleogram yesterday showed his spine is perfectly straight and there is no compression - GREAT NEWS! However, he does have a blood clot in his spinal cord and some spinal fluid built up and they will watch that very closely. The blood clot might be what's causing some of the pressure to his cord that restricts his breathing.

He still is somewhat sedated and is able to open his eyes every now and then. Hopefully tomorrow will be another day closer to recovery and making the next step to getting him out of ICU and into rehab. More soon!

Thursday, August 6, 2009 8:49 PM

Thursday, August 6, 2009 8:49 PM, EDT

Kyle had a procedure done today called a Myleogram, which uses a special dye to X-Ray to determine the swelling in the spinal canal. We should know the results in the morning.

He had an okay day, breathing over the ventilator and his meds have been decreased, which means he is experiencin
g some pain. He is able to indicate to us and answer by nodding his head, so he can indicate if he's in pain. His medical team continues to take wonderful care of him and seem to be happy with some of the progress today.

He's very frustated about the breathing tube in his mouth and constantly tries to move his hands up to his mouth to yank them out! Family and friends watch him all through the day to make sure he doesn't pull them out and he's not a happy camper that we make him stop! It's nice to see him respond and we all look forward to hearing him speak to us very soon!

We'll meet with the medical team first thing in the morning to go over the next options and his progress so far, so we'll be sure and give an update tomorrow!

Everyone in Kyle's family so appreciate all the kind words, thoughts and prayers. We firmly believe that every bit helps his recovery and hope that you continue to think about him and pray for him!

Thursday, August 6, 2009 10:27 AM

Thursday, August 6, 2009 10:27 AM, EDT

As of today, Kyle remains on the ventilator but off the sedation medication and just using pain meds. It appears that he now has pneumonia and a slight fever, so they are giving him antibiotics and Tylonel and it seems to be working well.

Right now, the doctors are trying to determine if his breathing issue is part of his injury. Even though he is on the ventilator, he appears to be working and breathing over the machine which is a great sign. However, he can't quite seem to take those really deep breathes he needs to in order to get his oxygen saturation level in his blood to where it needs to be. His injury is at C7 in his spine and the swelling of the spinal cord may be causing the muscle weakness in his diaphram. We hope that it's temporary and that's why it's taking so long to remove him from the ventilator.

His cuts and wounds are healing pretty well. They are still pulling glass out of the deep wound in his left arm. This morning, he was waving his arms in the air trying to get to the tube in his mouth, so his arm and finger movement is good! At some point he will need to have a procedure done where they will inject some dye into his spinal column to review the swelling...that will tell us alot. That's scheduled in the very near future, hopefully in a day or two.

The anticipation of getting him off the ventilator and being able to talk to him is brutal. He will probably remain in ICU for at least another week as they monitor him closely and get him on the mend. Thank you to all his friends and family with your prayers and support. All of Kyle's family thank you so very much.

Tuesday, August 4, 2009 9:23 PM

Tuesday, August 4, 2009 9:23 PM, EDT

Today was not the best day. We arrived at the hospital anticipating the worst of having to talk to Kyle and explain what happened, but we were prepared and ready to begin a new phase of his recovery.

His vitals are still strong, color is very good and he is breathing over his ventilator, but he is still sedated and has a breathing tube down his throat. He had a CT scan scheduled for 11 am and then scheduled to have a permanent IV line put in his arm to assist with IV delivery and helps prevent infection of being stabbed all the time. He also had a filter placed near his abdomen to prevent blood clots from traveling into his lungs and heart. Kyle returned to his room around 2 and we stayed with him for hours while we were told they would begin reducing his pain meds to get him to wake up and then make sure he was alert and stable and progressively take him off the ventilator. We just wanted to hear his voice.....

6:00 pm rolls around and they tell us they are going to keep him sedated overnight. No plans today to take him off the stress level and frustration factor hit the roof!! They don't have the staff to monitor him overnight if they took the tube out...could we not have been told this earlier? It was as if a brick had just been thrown at we have to wait another day.

This is very worrisome for us as this just prolongs his recovery and rehab. It's one more day that he can't start preparing for his future and getting healthy again and there's nothing we can do about it.

We are working on getting him into a rehabilitation hospital in Washington, DC so his family and friends can come and visit and share his experiences and accomplishments. As soon as this is determined, we'll be sure to let you all know.

Gary and I are so touched by the number of friends that have reached out to us and our family. We are so fortunate to have such wonderful people in our lives, from everyone at WHS where Gary works to my colleagues at AER and all the wonderful members of AER that have written me, to our neighbors, Kyle's schoolteachers and his close friends and their parents, to Karl and Jessica's friends and their families, and of course Gary's relatives and my family and our extended family....we are so blessed to have you in our lives and in Kyle's life. He is a very special kid and we love him so much and we just want him to come home and be Kyle again...every night after we get home and ready for bed, we hear a car coming down the street and think it's Kyle coming home from's just not fair.

Thank you again for ALL your words of encouragement and help. You have no idea how much it means to us and to Kyle. We love you all and hope to see you real soon and to have Kyle with us, that's the most important goal in our lives.

Bette Anne and Gary

Monday, August 3, 2009 6:18 AM

Monday, August 3, 2009 6:18 AM, EDT

On Saturday, July 31 at about 9:00 am, Gary and I received the phone call no parent or family, or friend ever want to receive. Mary Washington Hospital called Gary's cell phone to tell him that Kyle had been in a car accident. They asked about some medical history and asked how far away from the hospital we lived. They said Kyle's okay, but you need to come down to the hospital.

en we arrived, we were escorted into a room off the Emergency Room entrance. About 15 minutes later, the Emergency Room Attending Physician came in and proceeded to tell us that Kyle had been in a very serious car accident.

Kyle had broken his neck at the C7 area and had possibly injured his spinal cord. He had no feeling in his legs and hands and had a broken arm and serious head lacerations. He has a very serious bruised left lung that is capable of giving him some serious pulmonary issues as well.

At this point, Gary and I were completely confused and not prepared to hear any of this. The state trooper was next to enter the room to give us the preliminary details of the accident.

Kyle had apparently fallen asleep at the wheel on Route 17 near Bealeton. His car hit a guard rail and then went into the median ditch which made the car start to flip. They believe the car flipped about 4-5 times. A good sammaritan drove up just after it happened and called 911. The EMT's were there very fast and it took about 30 minutes to get him out of the car. He was at the hospital by 8:40 and treatment started.

Kyle was rushed into surgery to have his spine realigned as the impact of the car rolling compressed his spine. The surgery did determine that his spine is crushed causing paralysis from the chest down. His arm is not broken, but he has a very bad laceration that went down to the bone and the muscle in his forearm very badly torn and damaged.

During the surgery, a metal plate was placed in his neck to keep his spine aligned and to decompress the spine. Unfortunately, there is nothing they can do about his spinal cord. Initially we had been told that the spinal cord was severed, which is the worst news anyone can have. But the surgery did show it was crushed. And while this does not immediately change his prognosis of being able to walk, it does allow the hope that someday, a treatment will be developed for spinal cord injury patients to be able to fully function again.

Today, we Kyle is under sedation and intubated on a ventalator to help him breathe. The injury did not affect his breathing capability, thank goodness, but we are meeting with this trauma team this morning to determine if another surgery should be performed or if we proceed with a care plan to address his other physical issues.

We thank ALL our family and friends and ask that you keep Kyle in your prayers and thoughts. Today will be a very difficult day if we determine to take him off the ventilator and wake him up. He doesn't know the extent of his injuries and about his paralysis and he'll need to be told. He has a great team of Doctors and nurses in the ICU at Mary Washington and we are struggling with how to tell him and help him understand that while he might not be able to walk today, we hope in the future that he will!

Kyle will be leaving Mary Washington at some point and going to a Spinal Cord Rehabiliation Hospital somewhere in the US. We will being working with his medical team to determine which hospital is the best for him and will of course keep everyone in the loop.

We will update everyone today after we determine the next step.

Monday, August 3, 2009 9:13 PM

Monday, August 3, 2009 9:13 PM, EDT

SOOO many thanks to everyone who has written's overwhelmin
g to know Kyle has so many thoughts and prayers. They are all appreciated.

Kyle had an "okay" day......We all decided that we will forgo the second surgery and have Kyle fitted for a full Halo to help support his neck and begin a natural healing of his neck muscles. So they came in his room early to size him up.....that was at 10 am...the nursing staff then began the process of discontinuing his sedation medication.

We went to the hospital today with the hopes of getting him off the ventilator and get him breathing on his own and beginning a treatment plan. When they started to bring him out of sedation, in true Kyle form, the first thing he did was fight to get that breathing tube out of his mouth! We were warned that the medication would make him groggy and combative and he would probably struggle to move around and remove the breathing tube, so we took turns holding down his arms and trying to keep him calm. Those arms were flying around! We thought he was going to sit up and yank it out himself!

But before the doctor's will take him off the ventilator, Kyle has to prove he can breathe on his own. He was doing pretty well, but it was taking too long for his halo to get installed and we didn't want to risk any more injury to his neck. So they are keeping him on the ventilator overnight and until tomorrow.

Tomorrow morning, Kyle is having two minimal procedures done, and then we will be taking him off the ventilator and hopefully he will be alert enough to talk.

Right now, Kyle is unaware of his condition and we'll have his close family around tomorrow to explain to him what's happened and what we will need to do to get him home.

He will be at Mary Washington Hospital for at least another 10 days. We are currently looking for the best spinal cord rehabilitation hospital we can send him to begin his rehab.
He's had many of his wonderful friends and family visit him and while he hasn't been able to acknowledge them in person, we know he must realize they are in the room with him. We'll be sure and share all your notes with him and let him everyone is thinking of him.

Gary and I are overwhelmed with all the love and support our family and friends have given us. We can't thank everyone enough and please know, your kind words and thoughts are very much appreciated. We continue to ask for your prayers and thoughts and we know they are working...Kyle continues to look better every day!

We'll update everyone's going to be a tough day!