After tucking some dry sheets beneath her and refilling her feeds with a calorie dense powder, her line occludes. The pump bleats it angry warnings. We change the feed bag and lines, turn on lights, check her tube site. Meaghan sleeps through this all.
This past Wednesday, we had our family meeting with the doctor, clinical nurse manager, social worker, program coordinator, and physical, occupational, speech and recreational therapists. She will come home with a hospital bed, bedside commode, wheelchair, walker, bath/shower transfer seat, feed pump, pole, and feeding supplies. We will also receive palliative support.
As the glare of the netbook screen illuminates this little corner of the hospital room, I rub down my face in exhaustion. This is going to be a full time job. Meg will require outpatient OT, PT and Speech three times each per week. How much improvement can we gain before maintenance chemo starts? Now that she has some fine motor skills, how do I fold in academic needs?
I am mom, substitute teacher, substitute therapist, home health care provider... And this is just for Meg! It's no wonder I'm filled with apprehension. The issue that is raising my irritation now is not only is Meg saddled with being an oncology patient, she's also a rehab patient. Why the double whammy?
Despite all this, I don't feel sorry for our family. I certainly feel we are being challenged, but I don't hang my head in pity. Maybe I should feel sorry for us, but really, let's look at the facts: my children have a mother and father who love one another, we have a roof over our heads, food in our bellies, reliable cars to drive, clothes to wear and fun toys to play with. My husband is employed and blessed with amazingly empathetic managers. We have a supportive family network and a very broad, supportive network of friends and church family as well.
Meg is the drum major for her own marching band of supporters: fiercely devoted ambulance crews; caring and nurturing medical staff at radiation; therapist "friends" who encourage, support and challenge her; nursing staff, social workers and doctors that go beyond caring and are invested in our family; prayerful family, friends and strangers... Truly, the blessings outweigh this curse.
While we feel a healthy amount of fear in bringing her home, I also know we are not alone. We never were.