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Monday, May 14, 2007

Blessed with Dylan at 6:19am at Rogue Valley Medical Center.

Weighing in at 5lbs. 14oz. 21 inches long.

 
Thurs. May 7, 2009

Dylan started not feeling well when we were at costco. I took his temp. when we got home and gave him some tylenol. We put him to bed early, hoping it would help.  He woke up around 9pm, his temp up to 103.8. I called the on-call service, we were getting worried about his breathing. They told us as long as his temp was under 105, and he wasnt lethargic and still having wet diapers, breathing in the 30s, to just watch him, and call if he gets worse.  We were able to manage his breathing with his usual nebulizer meds., and put him in bed with us.  This was his first time sleeping with us in our bed at home.

 
Friday May 8, 2009

Dylan started throwing up early this morning, but his temp. was down.  The doctor office had us come in at 10 am, knowing Dylan and his history with pnuemonia, we all figured we better check this out.  He seemed as if he was getting lethargic, life-less, tired, etc. but he was able to keep down 2 popcicles.  Dr. thought blood work should be done. Usually Dylan hates and fights any sort of needles. Not this time. We thought, wow, he really isnt feeling good.  Blood work came back that there was some sort of bacterial infection somewhere.  Dr. admits him to the peds unit at RVMC, to do IV fluids, antibiotics, and to test for a urinary infection.  Usually he fights the IV, and it takes a couple of us to hold him down.  Not this time, wow he really isnt feeling good.

We go back to his room. It took Dylan awhile to get comfortable, and then fall asleep.  Marcus decides to go home and check on Ryan while Dylan is asleep.  I call my sister, to let her know where we are.  As I am talking to her, Dylan's left arm and cheek start twitching, I hang up the phone and go get the nurse. Dylan is having a seizure.  I get into a wheel chair, Dylan in my arms, and they take us to get a CT Scan, he is still seizuring.  We get back and both Drs are here at the hospital now.  They want to do a spinal tap to check for meningitis.  They take Dylan into another room, to do the procedure. Dr. comes out says everything went well. As we are speaking Dylan stops breathing, and his heart rate drops.  They are able to put a bag on him and breathe for him.  The Dr. tells us Dylan needs to go to Doernbacher Childrens Hospital, this is bigger then they can do.  He picks up Dylan, and we all run to the PICU area.  A team of nurses, respitory therapists, pharmicist, and his Dr. are all around him, doing everything they can to keep my baby alive.  The room is spinning, and I am ready to wake up from this nightmare that has only just begun.  GOD help my son.  I will do anything, please help him.  I look at Dylan's eyes, something has happened.

They get him stable on a ventilator, and we wait for Team Panda to fly from Doernbacher.  Marcus, Maralee and Ryan hit the road to get a head start for Portland. I fly with Dylan to Doernbacher.  When I am on the plane, I ask the nurse if he is sedated...No.  I look at his eyes, something has happened.

We're finally here.  They rush Dylan to PICU. A team of Drs. and nurses swarm around him, as I watch. The Dr sits me down and tells me he has suffered severe brain trauma, there is nothing more she can do. NO, not good enough.  YOU do everything to save him, this is my son, and I will take him anyway I can get him.

 

 
Sat. May 9, 2009

Marcus, Maralee and Ryan arrived around 2 am.  Maralee and Ryan sleep in the waiting room while marcus and I sit with Dylan.

Morning comes, the Drs. want to meet with us.  They tell us again, he has suffered severe brain trauma, he will never be of this world, and always require feeding tubes. This is my son, I will take him anyway I can get him. I will take care of him for the rest of my life.  You do everything.

We begin searching the internet for anything, some small hope that we will find a miracle drug, Dr., anything.  We tell the Drs. that as long Dylan is still showing us a sign that he is still in there somewhere, you do everything.

I sleep with Dylan in his crib, IVs, pick lines, wires, ventilator tubes draped over my side.

 
Sunday May 10, 2009
The Drs. want to talk again. Dylan's blood thickness is now stable enough to put what they call a "Bolt"(Inner Cranial Pressure Monitor) in his head to messure the pressure, the amount of swelling his brain has gone through.  Normal should be single digits, 20 or less they can help him.  It actually looks like a bolt screwed into his scull with wires attached.  His number...70.  We say do everything still, I am still waiting for that miracle to walk through the door.  They put him on a new drug, to try to reduce the swelling more. We ask them to please give him some food. I sleep with Dylan in his crib. Each night staring at that number, and the ventilator. Each time the ventilator takes a breath it is red, each time Dylan takes a breath, it is yellow...my new favorite color.
 
Monday May 11, 2009

Good morning, baby. Time for your bath.  As the nurse and I are giving Dylan a bath, his ventilator tubes clog, meaning no oxygen. The nurse has me call for another, and a whole team rush in, to save him. 

The Drs. want to talk again. They notice that when that all happened, and Dylan was not getting any help from the ventilator, he didnt try to breathe on his own, he never took a breath. We are not ready to make any decisions today, keep doing everything.  I sleep with Dylan in his crib, still watching for those yellows. There you are, Dylan, I know you are still there.

 
Tues. May 12, 2009

Good morning baby...todays the day you are going to shock the world.  You are going to be that medical miracle that stumped them all...please. 70 has gone down to the 40s, but blood pressure has begun to no longer be stable on its own.

Drs. meet again, its time to do some tests to see what is left of him. Not today, we are not ready, tommorow.  I sleep with Dylan, still watching and waiting for those yellows. Fewer and fewer. But he always seems to perk up at night.

 
Wed. May 13, 2009

Ok, we will do the tests, as long as it wont hurt him.

They do an Apnea test, fill him with 100% oxygen, then turn down the ventilator to see if his brain will kick in when his CO2 levels start to rise. Take a breath, baby. Show them you are still there...Nothing.  They do his usual vitals that they do every morning, check his reflexes, there, check his eyes...nothing.

Next, they take him and us to the Nuclear medicine unit. They inject some radio active solution into him to see if there is any blood flow to the brain. If there is, they are required to do all these tests again 12 hours later. If there is not any blood flow to the brain, he is pronounced dead at that moment.

We get back to his room, and the Dr. comes in. No blood flow to the brain...he is brain dead. It is only the machines keeping his body alive.  He is no longer there.  As much as it hurt to hear these words, I think I knew it since Friday...his eyes.

The family comes in to say their good byes. Then Ryan, Marcus and I have some time alone to explain to Ryan, that it is Dylan's time to go to heaven.  We do a clay mold of his hand, and hand prints. Then Ryan goes to the motel with the family.

We always said as long as Dylan showed us he was still there, we would fight for him.  He showed us when he was, and he showed us when he was no longer. So what about those yellows...they tell us that the ventilator is so sensitive for the tiniest of babies, that it was probably detecting saliva, or movement of us bumping the crib, etc.

The Dr. comes in, she and the nurse remove every wire, bolt, tube, line, hose, except for the ventilator.  When we're ready, ha, when we're ready. Ok...they remove the ventilator, and I pick Dylan Robert McNeil up in my arms, and sit in the rocking chair, and my baby dies in my arms.

This is not goodbye forever, Dylan, this is goodbye for now, I will see you again, I will see you again.

 
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