Been a while, huh?
Let us explain.
On August 19 we had to bring Lillie into Dell Children’s
Hospital. While she had been having
issues for the past few months with vomiting, giving her Zofran was able to
stop the episodes. We would then put her
on fluids and work her back to her normal feedings over a couple of days. But the weekend of the 19th, the
meds didn’t work. After trying to control the illness for a couple of days, we
realized we had to take Lillie in.Long story (and stay – 8 days) short, Lillie was diagnosed with gastritis. She had bleeding in her stomach from open sores that were either caused by or were causing the vomiting. By the time she got home, she was so tired of the hospital, she lit up and we got the first real smile we had seen for over a week.
One thing we learned from our stay – get a plan from your
doctor. You know we love the people at
Dell; they have always treated us with respect and gone above and beyond when
taking care of Lillie and us. However,
we feel the stay could have been a little shorter if we had demanded the
doctors give us a plan sooner. As a
parent, it’s tough to remember that when your child is in pain and there are
more questions than answers available.
Ultimately, it took a more experienced doctor to push the
younger doctors into making a detailed plan that explained what had to happen
to get us home. We got that plan on
Friday and we were discharged on Saturday.
On a lighter note, there was something very good that came
from our hospital stay. We got Lillie
into a study at Dell that should help us with the organization of Lillie’s
appointments and visits. It will also
centralize all of her medical information so we are not the only ones that
understand the full picture of her health and development.
On Friday, we spoke with a doctor involved with the study –
who has a daughter with special needs herself.
She explained they were trying to change the way pediatricians handle
children with complex health issues. In
order to qualify, your child needs to have multiple health issues requiring
multiple specialists.
There is a control group that continues to see their current
pediatrician. They get a phone call once
per year where they are asked a series of questions about the health of their
child and the quality of the care received from their doctor. That is compared to the other group that
changes their pediatrician to one at the Children’s Comprehensive Care Clinic
at Dell. That group goes to the clinic
for care and answers the same questions once per year.
After hearing about the study, we signed up. We expected to wait a few days to find out
what group Lillie would be in. We got
the answer the following day. Lillie
randomized into the clinic group. We
were very excited, just a bit sad we would have to leave our current
pediatrician. She has been great to us
and we really are sad to leave. Over the last week or so, Lillie seems to be doing much better and is weaning off the stomach medication she needed to heal the inside of her stomach. She’s getting back to a more normal routine and we are getting her smile and laughs back, again. We started with a new Speech Therapist this past week and are excited to get going on all her therapies.
We look forward to going to the new clinic and we’ll let you
know what we think. We’ll try not to be
so long away next time, too.
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