Gratitude

- - - - - - - - - - - - - - - For those of you familiar with our journey, you know that after my child’s transplant I thought we were home-free.  Although I didn’t expect 7 hospitalizations since then (hence skipping some monthly columns), I’m still grateful. 

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:

Top Children’s Hospitals http://health.usnews.com/best-hospitals/pediatric-rankings

Top Hospitals http://health.usnews.com/best-hospitals/rankings

Top Doctors http://health.usnews.com/top-doctors/specialist-index  (see pediatrics by specialty) 

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.