Tuesday, December 05, 2000
Haberman Bottle & Tube-Feeding Update
One of my favorite nurses tried the Haberman bottle during my 9:00 feeding this morning. She told Mommy that I got about 5cc--- not much but it’s progress! Mommy tried the bottle again at my noon feeding. I sucked a little bit but didn’t get anything. For my 3:00 feeding, Mommy dipped my pacifier in formula, so I got some taste. Daddy is going to try the bottle with me again for my 6:00 p.m. feeding.
Mommy started both my noon and 3:00 p.m. feedings using the Kangaroo Pump for my feeding tube. This is what Mommy and Daddy will use at home. Formula goes into a bag that looks like an i.v. pouch, and the bag hangs from an i.v. pole. The only thing left for Mommy and Daddy to learn about my NG feeding tube is how to insert it and check placement. They aren’t too thrilled about putting a tube down my nose, but if they can learn trach care, then this should be a piece of cake.
One of the renal doctors came to see me today. She said the 24-hour urine collection they're is to rule out any serious things that cause kidney stones. They're pretty sure the stones are from too much calcium, but the need to be sure. I only have the one after all!
A dietician is coming by tomorrow to see if my formula should be changed. I may be put on a special formula to protect my kidney from being overworked. The good news is that this is all preventive. Mommy and Daddy will need to watch for decreased urination, which could indicate that one of the kidney stones is blocking my urethra. The nephrologist told Mommy that I'll never be allowed to play contact sports like football or hockey because of my single kidney. They have kidney guards I can wear for other sports like baseball and basketball.
Oxygen & Ventilator Update
Respiratory therapists reduced the oxygen level while I was off the ventilator today. I've been getting anywhere from 35%-40% oxygen while off the vent, but today I only got 25%. The lowest oxygen setting is 21%, so I’m getting really close. They also took me completely off the oxygen when I went back on the ventilator. It would be really nice if I didn't need oxygen—one less piece of equipment to carry around!
Ohio vs Michigan Update!
Mommy had a nurse help her change my trach today. Daddy's in charge of tonight's bath. He's ready to battle with my nurse over what clothes to put on me afterward. She already had my Michigan sleeper and blanket laid out!