Errol Milner Clifford 2006-2009
Monday, December 28, 2009
Sunday, December 27, 2009
(please follow link to view slideshow)
The weather was overcast and misty
as we gathered flowers from Becky's garden.
A dish of whole flowers and petals was prepared
and we took these to the SOLOMON T.
As we warmed the motor, a pelican joined us
on the transom to get a better look.
The Moravian Star in the photo is part
of our boat's Christmas decoration.
And then we were for the Cape Fear
as sunlight sifted through the clouds.
We released the flowers into the tossing,
surging current, their colors standing out
against the swirling river.
Soon the tide would turn for home
and the river would run back to the sea,
once again part of this great ocean planet.
Capt. Bert Felton
with help from Becky, Melissa, and David
Friday, December 25, 2009
A memorial service for Errol will be held on Wednesday, December 30 at 2:00 p.m. in Wait Chapel at Wake Forest University in Winston-Salem.
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Wednesday, December 23, 2009
Tuesday, December 22, 2009
Tears, but tears of joy. We are still in the weeds, but right now Errol's sats are up, blood pressure looks better, and Errol is doing better all around. The PCICU team is amazing. Errol is rallying, we are still on the edge of catastrophe, but we are pulling ahead. Go Errol! Go! We miss you so much. We want to see you smile. You are so beautiful. Come back.
Monday, December 21, 2009
Hold the phone. Errol's pacemaker surgery has been postponed until...???
Sunday, December 20, 2009
Saturday, December 19, 2009
It snowed here last night. It's really cold but beautiful.
Errol is really out of it right now - post-opish. They've got him sedated and doped up on pain meds (sounds like my twenties). No operating heavy machinery for Errol, today. He had a really bad day yesterday - working so hard to breathe - and the PCICU team wants him sleeping and stable for the weekend so that he can get his strength back.
Errol is most likely going to have surgery to have a pacemaker installed either Monday or Thursday. We still hope his heart becomes synchronous, and there are some encouraging signs, but if things stay the same they will have to open him up.
They say it's not a big deal, "we just go into the chest, but we don't have to open up the heart." Try telling that to Errol's poor chest which is just now starting to heal. But I suppose it's better now than later.
We will definitely be here for Christmas and almost certainly for New Year's. Before you feel too sorry for us, please know that there is an espresso stand in the hospital!!!! I know that won't make Errol feel better (they won't let me put him on a latte-drip - bastards!), only getting healthy and home will really do the trick.
Sometimes when I see Errol in pain, straining for breath, miserable, pulling at his tubes, suffering, I wonder if we are doing the right thing to work so hard to save him. I wonder if there is enough light in his life to outweigh the suffering. But if I step out of the PCICU tunnel and look at just one picture of Errol smiling, the wondering stops.
Before the last surgery, I thought we were going to lose Errol. I thought: this is the best person I've ever known (sorry Katie Couric), he's achieved enlightenment, he's spreads joy to all. What a huge pity to lose such a rare and blissful light.
The snow is starting to melt outside. It will be a long time here at the hospital but one day we will step out into the sunlight and Errol will look up to us and smile.
Friday, December 18, 2009
To try to help him get more oxygen, the docs sedated Errol and put another chest tube in to drain off fluid from his right lung.
They drained off about 350 ml (a can of pepsi worth of fluid), but that wasn't enough
to bounce his sats up, so about an hour ago, just as the sedation was wearing off, they re-sedated Errol, paralyzed him (so he couldn't move and hurt himself, and then re-intubated the Little Man. The breathing tube went right in and now Errol's unparalyzed, sleeping soundly, and his sats are back up. Whoo Hoo!
Now all we have to do is get those tubes back out!
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!
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.
Thursday, December 17, 2009
Wednesday, December 16, 2009
Errol is in the PCICU (Pediatric Cardiac Intensive Care Unit - picked a peck of pickled peppers) recovering from his surgery.
He is stable and taking small steps towards being 100% Errol (he's at about 35% right now). The goal is to slowly but surely take tubes and wires out of the Little Man, and so far we've gotten one of two chest tubes out and are aiming for an extubation (removal of the breathing tube) in a few hours. Unfortunately, there are still four central lines, one peripheral iv, pacer wires into his heart, a foley catheter into his bladder, and about twenty leads monitoring his vitals. One day he will be just Errol!
Tuesday, December 15, 2009
The surgery was a success!
The doctors lowered Errol's body temperature during the surgery to slow his bleeding and now they are warming Errol back up (350 for 25 minutes?) Errol is off the heart-lung machine and the surgeon is stitching him back up and he will soon be up to the Pediatric Cardiac Intensive Care Unit for recovery.
It's still going to be a long and bumpy road to full recovery, but Errol's heart is working on its own, and better than ever (while they were under the hood they fixed a leaky valve).
Now on to the PCICU!
More updates to come.
Ring them bells!!!!!!!!
It will be a while longer before they take Errol off the machine, but all is going according to plan, and thankfully, there have been no big surprises.
We feel the love!
Monday, December 14, 2009
Sunday, December 13, 2009
Saturday, December 12, 2009
Errol is scheduled for open-heart surgery on Tuesday at Duke.
His doctors say that Errol's endocarditis (heart infection) has made this surgery much more dangerous than the open-heart surgery he had in August.
The cardiologist said that we will be at Duke for another month if Errol survives the surgery.
We are devastated.
Think of sweet Errol.
Friday, December 11, 2009
A wise friend once told me that what she loved about living in New York City was the range of emotions she experienced every day. She should have moved into Duke hospital.
Today, after a lovely lunch in the cafeteria (just kidding) I walked past an XXL family, with kids in tow, slouching towards the elevator. We all climbed aboard, and as the elevator doors closed, a security guard rushed over and thrust his arm out, reopening the doors.
“Sorry folks. No kids allowed upstairs in the hospital.”
It’s true. Owen hasn’t seen Errol for two weeks. We even told security Owen was a 40 year-old midget with a close shave, but it didn’t work. We’ll try the old catapult next time.
The mother protested her child being bounced from the hospital, “But they let him in yesterday!” She protested.
Now, when you stop and think about it, the old ‘but I broke the rules before’ argument is pretty lame. “But officer, I killed yesterday!”
Which, of course, doesn’t stop me from using that argument myself. In fact, it worked nicely in the Ronald McDonald Room yesterday! Besides, I hadn't rollerbladed all week!
“That’s the rules, folks.” Said the guard.
“But his daddy’s terminal! He's not gonna last long!” Cried the boy’s mother.
“That’s the rules, folks.” Repeated the guard. And remember, when in doubt, say it again, and that's just what that guard did.
"That's the rules, folks." And the family got off the elevator, and, as far as I know, the boy didn’t get to see his dad.
Later, I saw a mother wheel her newborn son out of the hospital. How they got those wheels on that baby, I’ll never know but they sure were movin'! The mother and father were so proud. So full of love. Just starting out. The baby looked pissed. It was 40 degrees (just a wee big colder than inside mommy's belly.
That afternoon, a grinning man got on the elevator and asked all of us how we were doing. We all froze. What did he really want? Was he going to sell us something, start shooting, yodel???? Luckily, he didn’t yodel. Of course, the reason he asked us how we were doing was so we would ask how he was doing. Which is why sad people (and bears, for that matter) don’t ask elevators full of people how they are doing. They don’t want to be asked themselves.
But the category-five grinner wanted to be asked. No one wanted to be the one. To fall further into this intereview in reverse. But we still had at lest hree floors to go (if the elevator didn't stall, the hospital run out of power, and the seven of us test BMIs until we could decide which one to eat first. Arghhhh! So before we went down that road (that's where I live, by the way) soon enough someone begrudgingly obliged.
And how are you doing today?
He didn't have to think about his answer whic he gave full throated answer like a meuzzin leading a prayer.
"I'm so glad to be alive!" You don't hear that a lot, by the wasy, out in civilian world, its not the first time Iv'e heard it at Duke. It;s not the first time I've said it. So who was this man: cancer survivor? Now father? Owner of the patent to the Zhu Zhu pets? Whoer he was, he was alive, and he was happy. And we were too, at least for a moment. Even those of us who were sleep-deprived, hungry, sad, terrified, just a little gassy(sorry, crew), depressed, anguished. At least, just for a moment we all felt all of his joy coursing through our ears and eyes and bodies. Then the doors to the fifth floor opened and I headed off to Errol.
I ought to ride those elevators more often. Sometimes they go up, and sometimes they go down, but no matter what, they are always moving.
Whatever you do, just don’t get off on 0!
Thursday, December 10, 2009
We got bad news in the cath lab today. Errol's infection has done serious damage to his heart and he is going to need to have open-heart surgery on Monday. Dr. Jaggers (great name!!!) is going to perform a Fontan procedure (a repeat of the operation Errol had in August). This time, the cardiologists are going to hit Errol with some heavy duty antibiotics to make sure the infection doesn't return. We will be moving our base of operations to Durham on Monday and will remain here while Errol recovers - probably through Christmas. Poor Errol. Life keeps throwing him curve balls, but he is always such a trooper. He is a wonder!
Wednesday, December 09, 2009
Tuesday, December 08, 2009
Monday, December 07, 2009
Sunday, December 06, 2009
Saturday, December 05, 2009
Errol had another stoppage in his chest tube and his afternoon x-ray revealed a growing pleural effusion. The wonderful nurse practitioner unclogged his tube, yet again, letting lose another torrent of fluid, and making Errol feel better (see picture), and (finally) eat! They've just done another x-ray (number 20???) and we'll see what it shows (hope for clear lungs!!!!!)
Friday, December 04, 2009
Thursday, December 03, 2009
Wednesday, December 02, 2009
We thought we were going home, but Errol's lungs have different plans. Errol has a pleural effusion (water on the lungs) and he's not going to get better until his lungs are drained as dry as the Atacma. The docs will decide this afternoon if the drainage will be achieved with meds (the patriotic way) or a chest tube (ouch!) The cardiology team will vote on lung management around two this afternoon and you can cast your vote on-line. Either way, we'll be at Duke tonight and we'll hope to return home tonight (in our imagination), tomorrow (with meds), or - most likely - Sundayish (with chest tube.)