Friday, August 22, 2008.
Wow. This update has been
needed for a while. Well, Ellie will be starting mainstream preschool
in a couple of weeks. Of course, I informed the ladies at the
preschool of her medical 'issues'. They said that won't be a problem;
in fact, one of the ladies said her mom has a colostomy. That makes me
feel better! She'll only be going one day a week for 2.5 hrs, but it's
a start. It's a mixed class for 2-5 yr olds at a Methodist church. Two
people (including one of Ellie's therapists) recommended it to us; when
I mentioned it to a lady at the Covered Bridge Special Ed offices, she
said unprompted that it was a 'good one'. So we feel pretty good about
sending her there.
We are also (still) trying to get her next two surgeries scheduled.
They will both involve plastic surgery, so it may take a while. Ellie
will have a skin expander put in on her right side. When they're done
filling it up, she'll have another surgery to remove the old skin graft
on her tummy, put gortex mesh in over her hernia, and cover all of that
over with the expanded skin. It may mean another Christmas in the
hospital; we'll see.
As far as development is concerned, she is a regular 3-year-old. She
loves going to church and to the pet stores to see all of the animals
and to the library. Soon, her bedroom will receive a 'big girl'
makeover, i.e. fresh paint and a twin bed to replace her toddler bed.
Well, Ellie wants to type something.
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That was interesting. Hope you all are doing well. God bless!
Friday, January 2, 2009.
Last weekend was exciting. Ellie went to the ER on Sunday for tummy
pain; turned out she has a 1.6 cm kidney stone that has traveled to her
bladder. She also had pneumatosis, or gas in the intestinal wall, which
indicates an infection. So after 11.5 hrs in the ER, we were sent home
with a prescription and orders to return if things got worse.
I called her usual urologist and he's going to refer us to one of his
partners who works on stone removals. They're supposed to schedule her
surgery on Monday (not 'for' Monday), so we're hoping the surgery will
be sometime next week. She also now has a slight fever and brown urine.
(I know, TMI.) We just hope we won't have to rush her back. She also
has a UTI (urinary tract infection) so she's on meds for that also.
We'll keep you all posted as info becomes available. Please pray for
her and her doctors/nurses. Thanks!
Tuesday, February 3, 2009.
Ellie came out of the stone
surgery fine, as most of you know. She didn't have to have an incision,
so that was a blessing. She had a catheter for 2 days and I took it out
(with Grandma Z's help).
We also went back to the Riley ER (for the third time) for abdominal
pain. The general surgeon we saw seems to think there might be a small
flap of intestine behind her stomal opening that is blocking the poo,
hence the big tummy and pain. She sent us home with a catheter I can
put in her stoma to drain the poo. Fun! This management is only
temporary until she can see her surgeon and get testing to determine
what to do next.
Thirdly, we have her next surgeries scheduled; Feb. 11, Ellie's plastic
surgeon will insert a tissue expander on her right side, only an
overnight stay. Then, for the following 6 weeks or so, we'll be going
to Riley weekly to have more saline put in the expander, gradually
stretching the skin. On April 21 (we hope), she'll have the expander
out and her general surgeon and plastic surgeon will close up her tummy
muscles as much as they can, take out her skin graft and pull over her
expanded skin to cover. Should be interesting.
So right now, Ellie is doing well. Please keep those prayers coming!
Saturday, February 14,
Surgery went well. The doc
inserted one large expander on her right side. She's still in a little
pain, but doesn't complain much; she just says it feels weird. We go
back Thursday to have our first return visit.
We also saw Ellie's general surgeon on Friday. He had a barium enema
done on her and x-rays. It showed no stricture or stoma problems. He
did say that because she has no abdominal muscles, her intestine has
dilated uncontrollably. This has caused pooling of stool just before
the stoma (exit). The only thing that can push it out is the pressure
(which is causing Ellie's tummy pains) from backed-up food. So we're
going to continue the routine colon irrigations. The doc also gave me
some more tips for irrigation to make it more comfortable (tolerable)
for Ellie and to help receive the maximum output, if you get my drift.
We see her urologist for a routine checkup on Monday, so two trips to
Indy (again) this coming week. Please pray for Ellie's continued
healing and for safe travels.
Thursday, February 26,
She's made it through the
first two 'fill-ups' of her skin expander; now she has two weeks of
rest. Boy does she get mad after she wakes up! Just screams in anger.
But she settles down pretty quickly. Each one seems to be better.
Her bowel problems are being successfully managed with routine
irrigations. Fun, fun, fun! Actually, once I got the routine down, it
became pretty 'normal' for us, just like changing her colostomy bag.
For now, she's comfortable and VERY looking forward to her birthday
party (coming up next month). Please keep us in your prayers, and thank
you for visiting!
Howdy! Ellie's 4th birthday party went great; we had about 10
other kiddos here at the house. Super crazy, but super fun!
Anyway, her fill-ups have been going as planned; a bit of pain
afterword, but she's up and running around by the end of the
day. Now we're just waiting until the 21st when she has the
expander taken out and her tummy fixed. I'll update again at
that time. Thanks a bunch, and keep those prayers coming (esp
for the 21st as well as getting a room at Ronald McDonald House)!
Thursday, April 23, 2009. Riley Hospital
First, we want to thank
everyone for the prayers. Ellie came through the surgery
well; we hope to go home tomorrow. (I'm writing this from the
activity room on her floor.) She's not hooked up to the IV
anymore and is eating regular foods, as well as pooing. It's
a bit of a challenge getting her pain under control as well as getting
her up and about, but we're getting there.
She's eating lunch right now (mashed potatoes and grilled cheese) and
we plan on attending a puppet show this afternoon. The drain
she has in her side should come out today or early tomorrow.
Her tummy looks soooo flat, and she has a vertical incision from the
bottom of her breastbone down to just abover her pubic bone.
(It kind of looks like a heart surgery scar, except its over her
abdomen, not her chest.) Her favorite words right now are
"Owie" and "Mommy". I'm sure that will change soon enough.
Well, I've gotta go see how her lunch is doing and how much Jer has
dumped on her :). Thanks for visiting, and I'll post again shortly
after we return home.
Thursday, Aprill 30, 2009.
Ellie is doing very well 10
days post op. She had surgical glue on her incision; it has
already peeled off and her incision looks great. She is also
complaining less and less every day; we're in the process of weaning
her off Morphine. She had her drain taken out on Monday; oh
boy, she didn't like that! It's not like we could have left
that in there, though. She's also eating more, which is very
welcomed. All in all, it was a very successful
procedure. Now (hopefully) we get a year-long
Thursday, December 3,
Ellie visited Dr. Rink at
Riley on Monday; we found out her next surgery will be on April 8,
2010. This will be the big one, to make her "bladder
continent" and dry. No more diapers after this one!
He said the surgery will be at least 9 hrs long and she'll be in the
hospital for at least 10 days post op. She's his only patient
for that day, needless to say. We have to be at the hospital
the day before (April 7) to clean out her bowels. I'm just
glad the surgery's not right before her birthday (March 26) so she
won't be miserable for it.
Other than this upcoming surgery, she's doing really well.
The recovery from her last surgery went quickly; hopefully this next
surgery will go as well. Dr. Rink had an ultrasound done on
her kidneys as well as a pelvic x-ray; everything looks good.
She does have a bit of fluid in one of her kidneys, but he wasn't
concerned about it. Ellie will have to have more testing done
before her surgery to determine the size and function of her bladder,
so one more trip to Riley between now and surgery.
Thanks so much for reading her update, and keep those prayers coming!
Monday, December 20, 2010.
Boy; it's been a long
time! Most of you have been keeping up with us on Facebook
and know that Ellie still has not had her Monti surgery. She
is now down to a maintenance dose of iron for her anemia and she is
growing bigger and stronger every day. She enjoys
Kindergarten a lot and is already reading like a pro! Please
feel free to email me at kwynn at ma.rr.com if you have any questions
or would like to chat. Have a blessed Christmas and a
fruitful New Year!