Helping Hands

I'm usually an ace when it comes to finding things on the internet.  Looking for a hospice program for Peter, I was defeated.  I couldn't find one with a pediatric focus.  Our hematologist (who abandoned us once he finished his tests and we chose not to do a transplant) said he didn't know of anything.  Our pediatrician (nice man, not experienced in this area) said he'd ask around.  I was about to cold-call Children's Hospital downtown, although it's not close enough to be convenient.

And then -- voila!  An "internet friend through Indian adoption" read some of my posts on Facebook and found Unity Hospice, a wonderful program that has a facility right here in Skokie.  They actually operate in several states, though they don't have pediatric programs everywhere.  Here's a link to their Pediatric Palliative Care page for our area:

http://www.unityhospice.com/services/pediatricpalliativecare.html

I called as soon as I got home from school and spoke with Susan, a pediatric hospice nurse with 21 years of experience.  This is how she started:

"Tell me about your son."

Susan and her social worker will be coming here on Friday for an initial visit.  The physician who works with them will be taking over Peter's medical care.  Peter will visit Susan every two weeks at first, then more often as needed.  There will be CONTINUITY.  The physician is an expert in pediatric palliative care.  Susan is an expert in pediatric palliative care.  The social worker is an expert in pediatric end-of-life needs.  And ... they take public aid.  Whew.

From now until the very end, we'll never get a bill from Unity.  They will provide just about everything we need, including some "comfort medications" when the time comes.  They'll take care of the details.  That is such a relief!  There are going to be SO many details.  At the end of the first phone call, Susan gave me her personal cell phone number and told me I can call her anytime.

Carl took Peter for a chest x-ray this afternoon because of Peter's ongoing chest pain.  Peter's lungs were completely clear and his heart was perfectly normal.  Then they stopped by our pediatrician's office and were able to speak with him for a few minutes without an appointment.  He doesn't really know what is causing Peter's discomfort, but he prescribed 5 days of prednisone.  I did some quick reading and learned that prednisone is often given to kids with blood disorders, leukemia, etc.  I couldn't find out why, but I'm guessing there must be some inflammation somewhere.  I don't think 5 days will do it, but we'll be seeing the palliative care specialist soon to discuss all of this in greater detail.

Peter's also taking a little ibuprofen at the pediatrician's suggestion.  I didn't dare to give him any because it's a blood thinner, but the doctor said it would be safe in small doses.  Peter's currently watching cartoons and he just wolfed down 1/2 a canteloupe.

My "internet friend through Indian adoption" also offered us her frequent flyer miles to get Peter to SPICE or help with any other travel.  Such a loving gesture.  I am so honored by all of the helping hands that have been reaching out to me.

"You probably don't remember me, but when I was adopting 10 years ago, you gave me advice on developmental delays and learning disabilities, and you were so patient with all my questions ... and it made such a difference ... and I just want to know how I can help you now".

Not just one or two emails like this, but a steady stream.  My SPICE friends all over the US and Facebook friends all over the world have been unstinting in their concern and support.  I've been in touch with a handful of people who have themselves endured the loss of a child.  They've all been pushing me to get connected with hospice now, to be proactive, to always keep the long-term situation in mind when making each decision People who have watched their children suffer don't mince words when it comes to advising other parents.

Mom and Dad always taught me to look 10 car-lengths ahead when I was driving instead of focusing on the bumper of the car in front of me.  I think that discipline is serving me well in more ways than they ever imagined.