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 words...you 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!