So in the hospital now and just talked with the nutritionist. Cole has gained some weight (yeah!) and is at 6lbs 2oz. So that's great. Much better than the 5lbs 12oz he was out. He is on milk that is fortified with formula.
We found out he was born in the 10th percentile for weight at 6lbs 9oz and is now below the 5th percentile. So we need him to gain about 1-2oz a day to consistently. And we need him to get back on track at least at the growth curve for the 10th percentile. He's got a long way to go.
So if the current supplemental feeding isn't working they can add more supplement. If the extra supplement isn't working we'll have to go with feeding tube. The feeding tube I thought was going to be really scary, but it's actually a small tube that goes up through his nose and down to his stomach. Super small and allows him to eat while he sleeps.. yummy
Today is chemo day - so we'll see how he tolerates that .. he has been doing well on the actual day then his red blood cell (hemoglobin) gets nuked the next day. We'll know more later.
Update:
No chemo today - white blood cell count very low (22) and so they are delaying chemo until the Neopogen (G-CSF) shots that stimulate his white blood cells kick in. I have a feeling his white blood cell count didn't kick back up because he had lost weight. So he needs to gain weight and get his white blood cell count up and they'll start him back up on the chemo.
Overall he didn't look as yellow as before, more pale than a normal baby - but not yellow. Also his lips had some color which is a good sign that the red blood cells are back.
So more waiting. At least he is as the hospital where he can be watched 24/7. So nice.
About Cole Kambeitz
- Holly Kambeitz
- Cole Jonathan Kambeitz was born October 5th, 2008. He was born with chicken pox-like lesions on his skin. After a CT scan, MRI, x-ray, ultrasound, and a biopsy, he was diagnosed with Langerhans Cell Hystiocytosis (LCH) at 3 days old. It affects his skin, liver and lungs. He completed treatment of 1 year of chemo and steroids and after a liver biopsy in late November '09 confirming no active disease, he is officially in remission. Today he is a very happy boy, excited to explore the world.
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1 comment:
The feeding tube isn't so scary, can be very helpful and it's only for a brief period. Am so glad he's also getting breast milk, it's so very good for him. You're learning a lot, Nurse Holly! ;o) Lots of love, Lynne & Uncle Dan
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