Xavier is in the hospital

[Guest guest]

Hi everyone..I just wanted to say hi. Xavier has been in the hospital since

last tuesday, and this is the first time I have been home since then, my

husband -made- me go home and get some sleep in a real bed. Anyway, there is a

huge long story, but I am exausted. So just the facts for now.

He had a gastric emptying, upper GI, swallow study, 4 NG tubes for feeding,

(still threw up with reglan, zantac, and with the NG tube in the stomach, and

then passed through to the intestines, could not hold anything down at all. He

is on TPN right now.) Echocardiogram, MRI, CAT scan, renal ultrasound,

testicular ultrasound, metabolic study...on and on. The drs seem to all agree

this

is RSS, (the childrens hosp. here knew what it was!!) but that it's being

exasterbated by his 18th chromosome abnormality. He has lost more weight since

he was admitted, so he is down to 12lbs 7 oz, (5 oz..but it's a lot for him)

and is at a neg. nitrogen balance. His surgeon tried to get him to gain a bit

before surgery with the NG feedings, but no go. He had surgery Wed. morning,

and had a G tube placed and a fundoplacation.(think I'm spelling that wrong)

Hopefully this will work. Dietician tried him on Pepatmen Jr. but he reacted

the same way he does with milk. We are just going to start pedialyte through

the g tube today. We got months of apts done at once throught this

hospitalization, every specialist they could think of saw him and evaluated.

Which is

good, but so hard to see him like this.

We are looking at at least another week in the hosp. so I will write more

when we come home. Thank you guys for giving me the information..although most

of the drs had at least heard of RSS, I still had to explain a lot, and

surprisingly, they were very receptive to my opinions about his care. But more

about

that later. I'm going to take a looooong shower and an even longer nap.

Love you guys!

Jen

Xavier 14months, 13lbs RSS (?)

Emerald, 5, Non RSS

Wyatt,4, Non RSS