Wednesday, December 5, 2007

No Greater Love

Henry's pheresis yesterday went as planned. The procedure of removing and separating his stem cells began early with the placement of a special line in his groin area. For this a special team of two nurses spent an attentive day at a large machine which withdrew his blood, separated it, then replaced it, warmed, into his body. He was under heavy sedation all day which also meant he was on a ventilator throughout. This was to ensure that he did not move during the procedure as it would hamper the results.

I spent my day mostly with logistics - moving our stuff from the car, checking out of The Children's House, moving the car - and with some catch up sleep, which while not completely restful in the chairs in the P-ICU (Pediatric Intensive Care Unit) was better than nothing and got me through the day. I also visited with some of the other families there and got a rare window into their lives.

One woman's daughter was recovering from toxic shock. Another family from North Carolina was in for their daughter's 18th surgery for brittle bone disease. A two-year-old little Chinese boy next to us was awaiting surgery for a heart defect which prevents his blood from oxygenating his lungs sufficiently. His adoptive mother had just brought him back from China less than a week ago. He'd been abandoned due to his condition and had been in an orphanage since very early. His new family had adopted him fully aware of his condition and has likely saved his life in doing so. This was their 3rd special needs adoption.

The different conditions we've learned about and had exposure to, including our own, have been random diseases, handed to us by fate. Families are forced to adjust their 'normal' to accommodate their new realities. For them, and us, there is no alternative. The family of the Chinese boy had chosen their situation, deliberately, with full knowledge. I spoke to the mother at some length and they see their choices as their normal and simply what they are supposed to do. To me, I see a nobility and self-sacrifice that I'm humbled by. It makes me feel honored to have met them, I hope for the best for the little boy's surgery, and am especially reverent of the capacity of human love.

Because Henry is here a bit early for his next round of chemotherapy, he has no medicine attached and his counts are good. We're free to move around the hospital with relative ease. This morning, instead of the wagon, he chose a small car with a push handle for me navigate. We went all over the hospital. He honked and waved at the nurses and shop owners. We put his purchased snacks in his 'trunk' and giggled when I purposely crashed into things or chased after the nurses.



He's already asking to go home. I told him that we have to stay for a long time again. He asked, "Will friends visit me?" - a call to his Grandmothers to come again. He's becoming very accepting in some ways, defiant in others. I like to see the fight in him, but some acceptance is good too.

5 comments:

Michele said...

Bryan,
You, Henry, Tar, & your familiy are truly an inspiration to families that have children with a chronic illness. As a nurse I can see my patients & families as I read your stories. I hope that someday I will be able to take these pieces that you have chosen to share with us & use them as I care for my patients or teach my students.
You are always in our thoughts & prayers
Michele (Hagerstown)

Anonymous said...

Glad the pharesis went smoothly, and that you had some "down" time to catch up on some sleep. ( sure sounded like you were very busy during your down time).
Wonderful pic of Henry, not quite as exciting as Cruckie, but imagine an OK substitute...by the way-great slippers.
nance

Anonymous said...

If Henry is up to visitors other than grandmoms during Round 2, and assuming there are good and bad times to visit, could you please list a number on your blog that we can call to check and see if it is a good time to visit Henry. Thx.

Anonymous said...

I'll be thinking of all of you through round 2. Keep fighting Henry!! Oh, and if Daddy keeps wrecking your car maybe you could teach him how to drive =)

Love,
Shanda

t said...

I agree with the last blogger...i would like a hospital address. I would love to send a colorful card or note.

teresa