Caylee's Page

Friday, March 13, 2009 – 12:37am

So 3/4 of Caylee's anticipated tests are completed...
 
3/11- Scope- appeared to the naked eye to be normal.  No erosion or inflammation of the esophagus, but they said before hand that they probably wouldn't find any since she has been on acid reducers.  A couple of tissue samples were taken and sent out to look for microscopic inflammation & those results will be back tomorrow.  She did much better than i thought i would with the 5 hr fast before hand.  She had been up most of the night fussing, so she passed out right when they turned off her milk drip & slept up until i put her on the table & they injected her with the sedative.
 
3/12- Upper GI- This morning they strapped her to a board and turned her on her side while i held up her head and bottle fed her a contrast.  Everything was anatomically correct & looked normal (good news!) but it did show reflux after 10cc.  She had to fast for another 5 hours before this one, and once again, she slept up until the test.  It took an hour following the test to get her milk to eat.... they were deciding if they wanted her to nipple or not, & if it would be thickened or not.  Meanwhile, Caylee's desperately trying to get milk out of her binkie.  Mama was not happy.....  Daddy got that one moving!
 
She has not gained hardly any weight since she has been here.... With the fasting & the fussing, she has used at least as many calories as she has taken in. 
 
A Pediatric dietitian came to see her today also.... They are trying to figure what she needs to take in for her size to continue to gain weight.  on straight breast milk with the thickening agent, which dilutes the milk, she is not getting enough calories to thrive.  She recommended adding a small bit of Neosure formula to her milk... formulated for premature babies.  Her milk is now the consistency of honey.  We are giving it a go to see if it makes a difference for her.
 
Speech Therapy is coming to see her in the morning.  This is a crucial component to her fully nippling her feedings.  If there is no physical abnormality to explain her discomfort, speech therapy is the next step.  They will evaluate & possibly try different nipple types/flows to see what will work best for Caylee. 
 
Her tube is not being used for 24 hrs starting this afternoon.  They want to see what she will take & how it goes.  THey have increased her IV fluids to ensure she does not become dehydrated from not taking enough milk.  Speech therapy will have that to start with in the morning.  Her nurse says she is old enough to have one period of 4-5 hours of uninturpted sleep per day or night, & make up the milk during her waking hours.  This will start to train her to sleep at night and eat when she wakes up.  So far today she has taken just over half of her milk..., but since she has fasted twice since we got here & has been on a constant feed, her belly & gut is going to take a day or so to get used to full feedings again.  She has had lots of "wind" but has not had a dirty diaper since the day before yesterdy, when she had 7!
Sounds like there is a chance she could go home on a tube, and i would tube feed whatever she doesn't take from the bottle.  I would learn to put it in & verify placement of the tube.  It would be temporary until she grows out of the reflux a bit more to feel comfortable finishing her feedings.  
 
3/12- Renal Ultrasound-  She had an ultrasound of her kidneys this morning also.  It was actually pretty good news... it showed level 1 (least severe) Hydronephrosis-   Level 1 has minimal chance for infection, so she was taken off the amoxicillin this afternoon.
 

Hydronephrosis is when a kidney becomes distended or swollen with urine due to a blocked or narrowed ureter. Ureters are the tubes that drain urine from the kidneys into the bladder. Hydronephrosis occurs when urine is unable to drain into the bladder. The three main conditions that cause hydronephrosis are:

• Vesicoureteral Reflux -- This is the abnormal backflow of urine from the bladder into the ureter and up to the kidney. This may be caused by an abnormality in how the ureter connects with the bladder or problems caused by nerve problems or dysfunctional voiding.
• Non-Obstructive Hydronephrosis Swelling in the kidney that has no effect on kidney function.
• Ureteropelvic Junction (UPJ) Obstruction -- In this condition, the ureter is "kinked" or narrow where it joins the kidney.