Saturday, August 8, 2009

8/8 - One Month in ICU!

Time has FLOWN by! I cannot believe Kameron has been in ICU for a MONTH! When we first started this journey, I wouldn't have ever imagined I would be 30 days into this ICU journey, with so much more ahead of us!
But, it's good. Things are good. I'm learning a lot (about myself, about others, about medical stuff). Kason is my little trooper. The nurses on Kam's floor rock (I think introductions are in order...). It's been a long 30 days but, at the same time - it's gone by so fast!

Anyways! Today was a good day. This morning they put Kameron's oxygenation down to 60%! They were hoping by the end of the day to get it down to 50%! woo-hoo! Because of this they also ...

turned off his sedation!!!!!

You have no idea how excited I was about this!! I was there most of the morning waiting for him to just pop open his eyes and be awake. BUT ... he has been on such a high dosage of sedative (plus the paralytic) and, his liver enzymes are high (more on that in a bit) and his kidneys are still on dialysis that it is going to take him a lot longer than normal to wake up. So, I left the hospital at 3:00 and his brain activity was still only at 50% (which btw, I learned, it's just percentage ... not anything fancy). So, we're still waiting. It's 8:00pm now and I just talked to his nurse 30 minutes ago and he still isn't really awake. He will do things that show he is coming out of sedation but, he isn't awake and alert yet. I can't wait to see him awake again!
They also had to put in another chest tube on his left side. While I was at the hospital Kameron's oxygen levels in his blood kept dropping below 90 and he kept "desat-ing" at 87. Finally, they did a chest x-ray and saw a huge pneumothorax (leak in his lung) in his left lung. So, Dr. Hueng quickly put the tube in and within a few minutes his oxygen levels were back up to 97-98.
Now, his liver enzymes are high because they have been feeding him TPN (which stands for: Total Parenteral Nutrition, and is given through his IV) and apparently, long-term TPN affects your liver. So, they are weaning him off of that by giving him two tube feedings a day, which is up from just one a day. Once they pull the TPN off, his liver enzymes will stabalize and that will hopefully get rid of the jaundice he's still got.
His white blood cell count is up to 23.4! And his platelets are hangin' in there at 70,000.

Within a day or two they are hoping to put the trach in. Yay!

So, we are slowly, steadily moving along. We are a long ways from being out of the hospital but, we're getting there!


Kara, Garrick, Rylee and Jadyn said...

That's just INCREDIBLE!!!! I've been so excited and happy since you texted the news. Yahhhhhh!!!!!! You have been waiting for good news for so long, I am so glad that it is finally coming! Way to go Cam, keep fighting!!

Kara, Garrick, Rylee and Jadyn said...

**And way to stay positive and faithful throughout everything, Jami. You are so amazing!!!!!!!

laurdacooj said...


Alicia said...

PROGRESS!!!!!! That is all really great news! We're so happy! I think about you a lot, and watching (well, reading) you go through this makes my heart ache and swell all at the same time. So glad yo hear some good news!

Love you guys.

oleyfriends said...

If you have questions about Kameron's TPN or tube feeding, don't hesitate to contact the Oley Foundation. We have FREE information and peer support for families with a member on tube or IV feeding. Our web site is posted at

In particular, if the liver enzymes become more of a problem and Kameron's continues to need TPN, there is a new therapy being tested that you should know about called Omegaven. You can read about it at

Warm regards,

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
(800) 776-OLEY

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