Errol Milner Clifford 2006-2009

Errol Milner Clifford was born with a significant heart defect and a cognitive disability that prevented him from walking or talking. As we grieved the child we had anticipated, Errol’s full-bodied smile and irrepressible laugh turned our sorrow into joy, and taught us that many of the best things in life are unexpected. Inspired by Errol’s delightful spirit, friends, family, and neighbors rallied to support our family’s significant emotional, physical, and financial needs, through countless acts of selfless generosity. When Errol’s courageous heart finally failed him on December 23, 2009 we were left numb with grief. In these dark hours we listen hopefully for the echoes of Errol’s brilliant laugh. This blog is the story (starting from present and working back to Errol's birth) of the life and times of the amazing Errol Clifford.


Friday, December 18, 2009

Day four PCICU

A picture from last year's Christmas

The docs have weaned Errol from his cardiac meds and now his sweet little heart is working well all on its own! Unfortunately, Errol's heart is still arrhythmic, and we are hoping it will straighten itself out (as hearts often do). I'm thinking of Errol's heart right now and imagining it beating synchronously. Join me, it might just work!

In the quest for tube free Errol, the Little Man was extubated yesterday (go team!)
2 - 4 - 6 -8 Who did we just extubate! Errol! Errol! Errol!
and his sats are pretty good (for Errol - I'd be on my knees - wait, I am on my knees - I'd be passed out) but he's having a hard time breathing. We don't know if the breathing difficulty is because of pain - he's mostly off pain meds (he's tough as nails, they stick Errol for blood and he doesn't even flinch or wake up) - or if it's because of his partial lung collapse (not unusual in post-op). The docs may have to stick a chest tube in him this morning to drain off the right lung, or he may just get better. While you are sitting there with visions of synchronous hearts dancing in your head, take a second and imagine his lungs drying out. But not too much. We don't want to dehydrate the lad!

There is a ton of science up here in the PCICU but there is also a lot of art involved (knowing what to do and what not to do, when to do it, when not to do it. There are hunches, bets, guess work, hopes.) It's fascinating to watch. Most doctors try to pass their hunches off as hard science, but these Duke docs are good enough and confident enough to tell you when they don't know. We appreciate their transparency.

So, as Errol loses tubes and lines (an untethered Errol is the goal) the main problem right now is getting him to breath easier. Do your visioning homework and check back for updates.

Cary and I moved into a friend's sunny Durham garret last night. It is so comforting to be in a cozy home with shower, fridge, and stove - hot damn! We are dividing our days and nights at the hospital (1st shift: 4 am til noon; second shift: noon - together!!!!; third shift 8 pm til 4 am). We have been apart from big brother Owen since Tuesday and we miss him so. We are ecstatic that he will be joining us this afternoon - hooray! Owen's life and his Christmas dreams have been totally disrupted by this hospital stay, and we are determined to make this as fun a holiday season as possible here in sunny Durham! The snow will help!

This is a different life than we expected, but it's an exciting one and dear sweet Errol has made it so rich and deep.

Your love buoys us through these rough seas.

4 comments:

Marigene said...

Dear Jonathan and Cary,

We will envision Errol's lungs being perfectly healthy and him breathing beautifully. We will envision his heart being in sync (isn't this a good message for us all?) as well.

Natalya was in the hospital over Christmas her first year (2 wks. old). Mother stayed with her. Every Christmas since then, she has made beautiful angels and taken them to all the people at Newton General in Covington. She is working on them now. (Would be working on them as I type, but was called in to work at the hospital where she volunteers.) She remembers the people who came by on Christmas Eve, and how much difference it made! (We were home with Lennon xmas eve and xmas day for a bit.)

Take good care. So glad about the little abode in which you find yourselves. It will be a special Christmas indeed!

Love, Marigene

Stephanie Brown said...

We are synchronizing our hearts with yours and the little man's. Your resolute spirit and generosity of soul move us more than we can say. I have heard tell in Beltway gossip that you even make Joe Lieberman want to be a better person.

Anonymous said...

Lub-Dub....Lub-Dub...Lub-Dub...Lub-Dub...

Thoughts of a rhythmic heart and dry lung,
Izzie

DanielY said...

Jonathan and Cary

Errol is an inspiration to all who love life. Little by little, his heart has made all of ours grow bigger and stronger. We love you Errol. Hang in there!

Hope you are together on this Christmas.

Love, Daniel & Tracy