Here we go.... AGAIN....

So... Most of you know that we have been at Childrens again since last Wednesday... We had brought James into the ER in Delta for bleeding out of his G-tube early afternoon on Tuesday, the doc in the ER called the pediatric surgeon in Grand Junction and he told us it was totally normal, usually caused by some type of stomach irritation. Later that night he was having trouble breathing so we brought him back into the ER, by 5am he was doing much better, so they sent us home. By 8:30am, we knew he was MUCH worse, we hooked him up to the pulse ox machine at home and his oxygen sats were in the high 70s to low 80s. So we immediately took him back to the ER.

James was originally sent here with what they thought was pneumonia again. Both of his lungs were completely full of fluid when they took an xray in the ER at Delta Hospital... The doc in the ER called over the hospital pediatrician and our "secondary physician," Dr. Moore. When she came in the room she immediately told the respiratory therapist to do 2 more breathing treatments, he had just finished one called a duo-neb. It is called that because it has two forms of medication in it... So he took 3 duonebs one right after the other. He was still struggling SO hard to breathe. His little belly was moving in and out so fast he looked like a humming bird. :(

She knew immediately that something needed to be done and was on the phone to have us transferred right away... When the flight care team arrived at Delta Hospital they immediately sedated him and put him on a ventilator because the levels of CO2 in his blood were extremely high. This meant that, although his blood was circulating, it was not getting re-oxygenated correctly and he was pretty much suffocating. Watching them put the tube in to help him breathe has been the HARDEST thing I've experienced with all of his medical problems.

Since being at Children's they have realized that his lungs are full of fluid, not because of pneumonia, but because of the bleed he had (which we are still unsure where it originated from), his heart was working extra hard (especially since he has cardiomyopathy), and when the blood wasn't reoxygenating, it was backing fluid up into his lungs....

They tried to do some pressure testing today, which means, they take him off of the ventilator for an hour to see how well he can breathe on his own. He failed both times they tried today and only lasted about 30 minutes on his own. The second time they tried he ended up having seizures from being so stressed out. So they are going to let him rest and they might try again tomorrow. I will try to keep everyone posted as the days pass and he does come off the ventilator, but for now, keep those prayers coming!!! Love to all...

Joe & Nichole

Just another day...

I love when there's nothing to "report." (knock on wood) It's been pretty "normal" around here. Over the last two weeks, after all our company left, we've shared the crud amongst the Kurtz household. Now it's MY turn with it... Es no bueno...

Tuesday we took James to get his port flushed for the first time since leaving Children's.. I wish all encounters at the hospital went as smoothly as that did... It just makes me feel like fighting to have that port placed has been such a blessing for James... No more fighting to get a vein. YAY!

We are coming upon fever days for James, which are never fun, and with me not feeling well, I truly dread the long uncomfortable nights he's going to have... Poor baby... Poor MOMMY!! ;)

We are so excited for the warm weather that's been here lately... Not only does it mean no more cabin fever, but also the end of FLU/RSV season!!! WOOHOO!!! James gets his last Synagis shot on Wednesday (helps prevent RSV). I feel bad for getting his shots the day before his birthday, but he needs this last dose... Until next season... :(

On a side note... Please pray for baby Ben Page... He is in Children's as I type with a high fever (almost hit 106!!!), he is on the waiting list for a heart, but if one comes available while he has a fever, he cannot get it... Right now, according to his mom's blog, they are thinking pneumonia and have already started antibiotics... So if you could just add him to the list of prayers, I'd appreciate it and I'm sure his parents will too... I've met some AMAZING people and other strong and "chosen" parents at our multiple stays at the hospital... It just makes me feel like I'm not alone, that other people are fighting these battles and fighting for the life of their child... WE TRULY ARE AMAZING!!! ;)

Bittersweet...

Sooo... We had the most AMAZING Easter celebration this year... We decided to get the whole family together (my side and Joe's) to not only celebrate James' first Easter, but also his first birthday...

It's all pretty bittersweet. James turning 1, not knowing what the future holds or how many more Easters or birthdays he will actually see. And I could tell, as some people said goodbye to head home (however many miles they were going), they wondered if this would be the last time they would see him, and it breaks my heart. I'M the lucky one... I get to spend every moment of EVERY day with him...

Total, we had about 70 family members and close friends here... Lots of cooking, tons of great food... It was so great to see everybody come together, feuds forgotten, words forgiven. If only everyone lived like that everyday... Don't sweat the small stuff, don't hold grudges, who knows who will be here with us tomorrow... Sometimes it gets me, how much time people waste being angry or bitter...

Don't they REALIZE how precious every single DAY is?!?!?!?!