Looking at a change

HI everybody - I just got back from Augusta after seeing Dustin. I had not planned to go quite yet as Nerina and her family were there from Dec 29-31. However we are heading out to Colorado to see our daughter Tiffany and family and 2 granddaughters- one of which is getting baptized. It is a wonderful thing but my plate feels like a all you can eat buffet of too much weird food!

Dustin continues go have a hard time with the fluid on his lungs and is not getting the care he needs. We have initiated (with the great help of Nerina's family) in having him transferred to Tampa VA where they specialize in getting the patients off the vent. The doctor is an osteopath and has a real focus on a team approach. He has won humanitarian awards for his unique approach to the spinal cord and traumatic brain injury patients. It is his passion and he has followed Dustin's situation even though he is 300 miles away and not his patient!!

We will have to wait for the teams from both hospitals to converse and then if they will receive him we have to wait for a "vent bed" to open up. They have ae tpulmonologist that all she does is work at getting the patients off the vent. Apparently they are willing to do unique and innovative things to make it work. They even got a higher level patient with a C-2 injury (paralyzed from the neck down including the diaphragm) to breath on his own. they are very m uch into research and information. I love that!!

Dustin is a healthy 23 year old with a C4-5 injury and there is no reason why his lung continues to be collapsed. A doctor who is covering for Dustin's doctor has initiated an ENT (ear, nose and throat) doctor to see if there is something perhaps anatomically going on that is preventing his trach from doing the job. At least they are trying something different.

It is somewhat a hard walk for me to transfer him since the worst day of my life was when they flew him from Albuquerque to Augusta and had the 2 cardiac arrests and that it will be 6 hours away but Dustin is losing hope quick and feels he is worse than when he came there. Hope is everything and so is timing. With that in mind, we initiated the transfer. It will mean that I will go and stay longer, less often but his girlfriend, Nerina is 2 hours away and she will be able to visit as well. We are all very ready for some progress as they enemy really wants to get us hopeless. Nope we are moving forward and trust that God will lead us and give us favor.

The VA will probably not pay to have him moved from one spinal cord unit to another but we are grateful that we will be able to pay if necessary to move him.

Please pray that God's will be done in all of this and Dustin will begin to breath on his own and bedsores are healed and rehab is begun so he can get on with his life. His teacher from Fullsail sent him some books on writing and he read about 2 chapters and got so excited to start writing again. He needs a voice so he can begin to be trained on his voice activated computer.Fullsail has been awesome to offer their support. Many of them work in the movie industry and I believe they will be of valuable support to him when he gets on with life.

Dustin will also have his swallowing test after the holidays and when he passes he can start eating food again and hopefully gain some weight back .I am all ready to take him kale and collard greens to get some massive health back into him. ( he actually loves healthy food so no it is not torture.The speech therapist feels he will pass with flying colors and would like to have done it now but since holiday staff is decreased the doctor made him wait. He is my favorite professional there.

He was supposed to start his bowel management program today and we hope that will move forward. This will allow one more tube to be removed and allow him more dignity.

Rick and I have had a "weary" week and much is just now settling in. We will be getting some individual counsel with Pastor Henry. My biggest question is "how am I doing"? I don't really know as I have never walked in anything like this before. The bible says "in a multitude of counselors there is wisdom." I finally decided I needed some outside input. The enemy is trying every way to come between Rick and I and cause total devastation. I have to give him a break in that he is just doing his job. But guess what, we are doing our job and in Jesus name he is defeated! Your prayers continue to hold us up. You can imagine how valuable they are especially when weariness seems to be winning.

We love you all
mary pat