Memories Of A Mommy: Oh PICU, how I've missed You...

Sunday, May 23, 2010

Oh PICU, how I've missed You...

Just wanted to update everyone on where we are and James' condition.... We are still in Childrens and have already passed the 1 month mark... James was off the ventilator after only two weeks of being on it... Yay!!! He was doing so well the first week off the vent, but things have progressively (though slowly) gotten worse... He was sent to the 9th floor into a regular room last Sunday, and since then has required 2 blood transfusions and went through another fever cycle...

Yesterday we tried to do some breathing tests on him to see how well he would do off the c-pap machine, and he failed... He only lasted about an hour and then it took him 2 hours to recuperate from the whole incident... He ended up resting well through the night and even had an ok morning... But by noon he was starting to work harder and harder to breathe... His heartrate starting rising and not coming down, his temperature started going up, his respiratory rate was in the 60's!!! The doctors, nurses and respiratory therapists did everything they could on the 9th floor,they were suctioning deep down his nose and throat and pulling out huge blood clots and they don't really know where they are coming from... so they thought it would be in James' best interest to come back down to the PICU... So, here we are...

They missed us down here. Right now there are blood and other tests pending and more to be done first thing in the morning... I will try to keep everyone posted as these days progress... Please keep praying as I know you have... And he'll keep fighting, as he always does...

Love <3
Nichole

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James' Story

I am starting this blog to help family and friends follow our family as we go through the journey that is James' life.

James was born April 22, 2009 at 3:28a.m., after 9 hours of natural labor... He was 7lbs 8oz and 20" long and had the blondest hair you've ever seen!!!

Shortly after the doctor got him to start crying and breathing on his own, his heart stopped and he stopped breathing. They resuscitated him in less than a minute of CPR...

Little did we know our journey was just beginning.

James was born with cataracts. Something that was unusual enough by itself. His doctor (who is AMAZING) referred us to a pediatric eye doctor. She found, by way of CT scan, that James was missing his corpus callosum (the midline of the brain) which, I guess, is pretty common. She decided she wanted an MRI to make sure his optic nerves and pituitary gland were normal. The results were devastating.

James was diagnosed on May 28, 2009 with Septo-Optic Dysplasia. In the long run, it would mean poor vision, learning and developmental disabilities, possible seizures, possible endocrine problems.

We went to Denver to see our first round of specialists in June 2009. We saw genetics, neurology and endocrinology. From the first initial visits and bloodwork, everything looked promising. No endocrine problems, few developmental delays at this point (he was only 6 weeks old at this point), and the genetic bloodwork came back with no flags. WOOHOO!!!

Two weeks later, James ended up in the hospital for 10 days. It started with a fever and dehydration. He wouldn't eat. All of a sudden he was back to his birth weight. They placed an NG feeding tube down his nose so we could get SOMETHING into him!!! He started gaining weight and they set us up with occupational therapy for when we got home.

Six weeks later, James was sick. He was having home health nurses come 3 times a week to check his weight gain progress. At one of these visits the nurse said his lungs didn't sound well. We took him to the ER. They sent us to a different hospital (the same one he spent 10 days in 6 weeks before), it has a pediatric floor, our local hospital does not... They ran a few tests and some blood work. James had RSV/pneumonia. IN AUGUST... The doctor was pretty stumped, it wasn't the right "season."

It all went downhill pretty fast after that. James would spend 4-5 days in the hospital with these lung infections, come home for 2-3 days, then end up back in the hospital. He just could not shake these "bugs." He started on oxygen at the beginning of August, and he was just getting worse and worse, requiring more and more oxygen.

This went on for another month. Finally, on September 15, 2009, his liver swelled. His doctor was very concerned that something more was going on that they just were not equipped to find and treat. She flight for lifed him (and me) to Denver Childrens Hospital. This is where our nightmare truly began...

For those of you who have never been to a Childrens Hospital, let me explain how it works. It is a teaching hospital, so there is a team assigned to each patient. James had the blue team. Each team consists of the attending MD, the fellow MD, the resident MD and students... So, when the doctors would come in first thing in the morning, there was usually 6-12 of them, depending on if it was the weekend. Each specialist team also had the same amount of doctors. The most wonderful thing about this, lots of brains working to figure 1 problem.

The first week we were there was total HELL... It seemed they would do a new test every day and every day find a new problem. His heart, his liver, his hearing, seizures... The list seemed never-ending. FINALLY, about 2 weeks into his hospital stay, one of the neurologist residents found a genetic disorder that linked every little thing that James had, all the way to his blond hair!!! Unfortunately, there was no way to test for this genetic syndrome, we just had to wait for all the test results to come back negative for all the other tests we had already done.

On October 10, 2009, James underwent surgery to place a G-tube for feedings and they also took some muscle and liver tissue for genetic biopsies. He had grown very weak and wasn't able to keep any of his food down and was losing weight fast, again... They, of course, prepared us for the worst. Because of his low muscle tone, dehydration and because they really weren't sure what was wrong, James may not make it out of surgery, and if he does, he may need a ventilator for the rest of his life in order to breathe. James proved them wrong and came out stronger than when he had gone in. He shocked us all...

We were at Children's for a total of 5 weeks. About 5 days before we left, one of the head geneticists came to talk to us. James does have this genetic syndrome, it's the ONLY thing that explains EVERYTHING. It is called Vici Syndrome (veechee).

Children with Vici have a life expectancy of 6 months-3 years. Although one study showed a child that lived til age 6!!! So, now what do we do???

We give James the best life any baby could ask for, whether he's here for 2 years or 20 years. He is OUR baby, our Sweet baby James. We try to give him all the love he can hold and all the kisses he can handle. We give each other strength that we hope he feels and holds on to. We sing to him, we dance with him, we tell him we want him to stay... We try to be the best parents we can be for him (and for his brother, too, of course). God gave him to us for a reason... We may never know what that reason truly is, but we are not going to let GOD down.

Memories Of A Mommy

Sunday, May 23, 2010

Oh PICU, how I've missed You...

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James' Story

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