What's the word...

If you lose your husband, you're a WIDOW.
If you lose your wife, you're a WIDOWER...

What are you when you lose a child???

Just another day...

I am having a really bad week... I don't know what's different this week as opposed to every other week, but... I've been crying a lot. I've reached the point where I feel like everything I'm doing is completely WRONG... Like God made a mistake when he "chose" me to take care of James, and Joseph for that matter.

I can't keep up with laundry, dishes, etc... I would rather sit on the couch and watch a movie with the boys than clean... I don't think any person really LIKES to clean, but "normal" people find a reason to get off their a$$es and I just can't seem to find the motivation anymore. Am I depressed, um probably... Overstressed? Maybe just a little. I just don't get it... I want it done, I do... But I just can't drag myself to do it. I'm worn out, exhausted, depressed, sad, mad, frustrated, pissed off, angry, annoyed, irritated, resentful and every other feeling you can imagine...

My Mom is trying to help us get more organized. But I just don't know where to start... Maybe I do just need her to kick me in the tush to get me started... I don't know. I am feeling better today than I was two days ago... I cried all day on Wednesday. Don't know why... Joe would ask what was wrong, and I honestly and truly couldn't say. Maybe I just needed a good cryfest week... We'll see... I hope it just keeps getting better rather than worse. I know I'll have my "days," but hopefully not weeks like this one. Oh well.

Home again....

Well, we got home three nights ago and James is doing well. He is running his fever cycle though... (sigh) I wish there was a way to prevent these from happening.... Oh, well...

James had surgery last Friday, before we left the hospital... Nothing major, it was actually considered an out-patient procedure, but since he was already an in-patient, we stayed another night anyway... They placed a mediport!!! YAY!!! What this is, is a permanent IV that is completely under the skin. It runs under his left collar bone into one of the main veins.... This means he will ALWAYS have access.... SO, we shouldn't have to be sent to St. Marys or even Denver as often since they will have a way to draw blood and give life saving medications now....

Part of the reason Delta Hospital didn't like having him as a patient was because there was NO way to get IV access. His low muscle tone and heart condition make it really hard to find a vein...

Anyway... We're happy to be home... Trying to get all James' therapy sessions and nurse visits rescheduled... Today we spent the morning at the doctor's office and the hospital, getting bloodwork.... Unfortunately his sodium level has dropped again... :( I don't know what the doctor wants to do yet, but I'm guessing another blood draw to check again tomorrow... Sometimes it seems like it will never end, but you know what, as long as it continues, that means he's here with us.... SO, I'm pretty willing to sacrifice.... Mommy loves you James. :)

Still at TCH....

Sorry everyone for not keeping this more updated... We are still here at Children's Hospital in Denver. Fortunately, James got through his pneumonia and is sounding MUCH better. His oxygen requirement has gone back to normal and we are suctioning his nose A LOT less...

Unfortunately, James' sodium levels have been too low. They are calling it SIADH, which stands for Syndrome of Inadequate Anti-Diuretic Hormone. His little body is retaining fluid and not letting it pass... Sooooo, for the last 3 days, they have been poking him every 3 hours to get blood to check his sodium levels. Saturday morning they came up to normal range, so they increased his food. But by the afternoon his levels had dropped again. If his levels get too low it could cause seizures or even heart failure. But they have really been on top of things and before his numbers could get that low they started giving him sodium chloride. Today his numbers are back in the normal range, so they increased his feedings again about 3 hours ago. His next blood draw is at midnight (1 hour from now) and hopefully his levels are staying the same. If he drops down again we'll have to decrease his food again... He is only getting 15mls of food per hour. That's 3 teaspoons of fluid... The doctor said that it's just enough to keep him hydrated, because even though he is retaining fluid, the sodium levels are telling his body it is dehydrated.

If all goes well they will increase his food slowly over the next day or two and if his sodium levels stay normal and they get him to his goal feeding, which is 43ml/hour, we get to go home.... Our fingers are crossed. I have a lot of faith in my little man, he has pulled through so much, I know he can get through this...