and since RD Jessica saw him in April he has grown just under TWO inches!
this news makes the fact that his weight has not changed in the last 4 weeks an acceptable outcome of The Wean.
in fact, i am pretty excited that he has maintained his weight in spite of a growth spurt of unmatched proportions.
deets are as follows:
height: 2' 9.39" (approx 35th percentile)
weight: 24 lbs 1.2 oz (not sure of percentile...i think it is pretty similar to last month)
bmi (body mass index): 15.19...whatever that means. the important thing is it puts him in just over 50th percentile!
this. is. beautiful! Dr. S (cardio) will be extremely happy and Dr. P (GI) feels he has fixed his overzealous treatment of him. (a year ago, his bmi was 85th percentile! not acceptable...especially for a heart kiddo.) i think he will be able to look Dr. S. in the eye again without shame. :)
both Jessica and Dr. P are thrilled with how well he is eating. they love the amounts and the variety of his meals. Jessica is determined to get him off the weany little bit of bolus feed we are still doing (4 oz a day...practically nothing). to do this we are going to attempt to switch out one of his cups of whole milk with pediasure. i tried chocolate tonight and he was pretty good with it. ultimately, he still prefers water, but this will do as well as the milk i think so hopefully we will stop using the GT entirely within the next month.
i can't believe i just wrote that!
let's do that again, shall we?
hopefully we will stop using the GT entirely within the next month.
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
now. things were not completely rosey at the appointment. we are NOT happy with how his GT site continues to look. the skin around it is breaking down and the stoma is stretching. he could easily end up with an infection.
so.
we will continue a barrier cream called Cavilon and add something called Stomahesive Powder to help protect the skin.
if this does not help there is a different kind of protective material we could try.
he has also had some success with a VERY short term removal (we're talking 30 minutes) of the GT...long enough for the stoma to start to tighten up a bit. when they put the tube back in, the stoma should be smaller and not allow as much movement as it does now.
but here is the silver lining....
a child who isn't using his tube will keep the tube for the requisite 6 months before they remove it permanently.
but a child who has chronic issues with the skin will prompt a quicker removal and closure of the stoma.
so Tiernan's refusal to be like "most kids" may actually benefit him in this instance!
the original desire to keep it in place until after the fontan is pretty unrealistic for Tiernan.
number 1: Dr. S. is still not 100% convinced he will NEED the fontan. it is likely. but he just wants to watch and wait. have i mentioned i L-O-V-E Dr. S??????
number 2: IF he has the fontan, it may not be until he is 4 or 5! that is ridiculous. especially given his tendency toward irritation at the site.
number 3: whatEVER surgery he has at whatever age, IF he has a difficult time eating at first, they could do an NG. but i shall think positively.
so overall, this was an encouraging visit with some typical Tiernan complications.
on another topic....equally filled with awesomeness...
Tiernan. Sleeps. All. Night. Long.
i mean AAAALLLL night. 12 hours if i don't wake him up.
why in the world would i wake this child up you ask? because his eating schedule has very little wiggle room.
regardless. he is averaging between 10 and 12 hours per night and a 1 to 2 hour nap just to show off.
he is one cool kid these days. ;0)
No comments:
Post a Comment