Doctors have
literally saved my daughter’s life on multiple occasions. I’m thankful that there are not one but two
local hospitals in addition to the children’s hospital we use. We went to all three within 2 weeks. Families need to have backup plans. When we had an emergency, we went to the one
5 minutes away. When my daughter was in
pain and we were concerned it could become an emergency, we went to the one a
few minutes further out since they were a satellite of the children’s
hospital. When we knew we had time, we
drove the 1 ½ hrs. (sometimes 2 ½ if traffic) to her “regular” hospital.
In keeping
your child safe, families should know that if they don’t think they can make it
to the usual doctors, other local hospitals can stabilize your child then
transport to the regular hospital your child uses. We had 2 ambulance rides this past month but
it was safer than trying to bring her ourselves.
Now that
this has happened (twice), I’m trying to set up something where the local
hospital can consult with the children’s hospital so she can stay local if
possible (also much easier for us physically and financially to stay home
instead of staying out of state and for family/friends to visit). You need to check with your current doctors
to make sure they can consult with whichever local hospital (again, ours is a
satellite so easier). Then set it up
locally. I checked to see which hospitals/specialists
were recommended (see resources) and found that they did have in-patient privileges
at the hospital. I also gave those names
to my daughter’s “regular” doctors.
Another
thing that happened as a fluke was I called my daughter’s pediatrician just to
tell him she was hospitalized (again) and as he has privileges at the local
hospital he offered to facilitate a discussion between the local hospital
specialists as well as pediatrics to ease transition. Although the pediatrician is really her
“primary care physician” who knows all her medical care overall, I hadn’t
realized I could ask for help in the hospital collaboration.
Lastly, I’m
grateful for the little things. Although
my child doesn’t have much energy or strength, I don’t want her just watching
TV, iPad, videogames all day - I want to spend more time with her. Even if we can’t take our around the block
walks, we can go to the corner & back.
It’s a start. We can read
together. We can do puzzles. We can have word search races. We can listen
to music or if she’s up to it play instruments.
We can make holiday wish lists and shop online. And yes we can play on the iPad as long as
it’s a 2 person game.
When she
came home, she was falling asleep at 7 p.m.
The past few days she’s been getting closer to her regular 10p.m.
bedtime. But even if it’s later or the
middle of the night, I no longer get annoyed if she’s keeping me awake talking
loudly, shouting Pokemon attacks, laughing, or singing on the other side of the
wall when I’m trying to sleep. After
all, she’s still here.
Remain hopeful,
Lauren
Resources:
Lauren Agoratus is a parent/advocate who serves
as the NJ Coordinator for Family Voices, a national network that works to “keep families at the center
of children’s healthcare” at www.familyvoices.org. She also serves as NJ Caregiver Community
Action Network representative supporting caregivers across the lifespan for National
Family Caregivers Association in a volunteer capacity at www.thefamilycaregiver.org.
2015-10-21 xiaozhengm
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