Errol Milner Clifford 2006-2009
Saturday, August 29, 2009
Today we were surrounded by the tight embrace of family, friends, and community at Seeds of Love for Errol's Heart Beats in the Park. Under a bright blue sky, folks were led through a metabolic workout (hubba hubba), yoga, and tai chi.
When Errol arrived (fashionably late) he was given a hero's welcome. It's amazing how much joy one little boy (with one big smile) can bring to so many people, and it's wonderful to see the heart of a community grow so big.
There are more Seeds of Love for Errol events coming up soon.
Here's an interview I conducted with Errol where I asked him how he liked the Hearts Beat in the Park festival.
Friday, August 28, 2009
Great, great, great news today from Dr. Hines: Errol's wound is healing nicely!
With Curveball, we've learned to expect the unexpected (which makes the unexpected actually not unexpected and thus....nevermind)
We've all let out a huge sigh of relief and we finally feel like we can start our lives back again. Which is good since school has started for all three boys, Cary is back baking, and the dogs are chasing the chickens around the back yard.
Here's to expecting the expected.
Time for more salsa dancing.
Monday, August 24, 2009
Errol is home and healing. Hooray!
Thursday, August 20, 2009
Wednesday, August 19, 2009
Tuesday, August 18, 2009
Errol is back in the hospital (this picture is from Errol in the emergency department tonight). His wound has opened up and it's infected. The doctors have put Errol on a two day series of antibiotics and if that doesn't work they will put him on a VAC (wound vacuum device) to knock out the infection. Dr. Hines says that Errol's heart and lungs look good and that he thinks that part of Errol's syndrome must be an inability to fight infections (three surgeries, three infections). We will keep you updated on Errol's progress.
Sunday, August 16, 2009
People keep saying that Errol looks better than ever, that he's more active, that he's got more color in his face, that he should pull over and let his dad drive. Keep saying it! We are thrilled at our tough little man's recovery. Now that his blood is more oxygen rich, we hope for more progress ahead.
- headaches, breathlessness,
- nausea or vomiting
- inability to sleep
- swelling of the face, hands
- and feet
- and general weakness
Saturday, August 15, 2009
Friday, August 14, 2009
Only a week and a day since his surgery, Errol is home and healing. Errol’s operation was very successful and has significantly increased (and will continue to increase) the amount of oxygen in his blood. Our tremendous hope is that his more oxygen-saturated blood will give him greater muscle tone and higher cognitive function that might just give him the strength to walk, eat normal food, and perhaps even talk. We don’t really know exactly how high his blood-oxygen level will go and just exactly what it will lead to, but we can hope.
We carried Errol outside into the warm evening air and celebrated his homecoming with sparklers and Roman Candles. A dragonfly alighted on the flowers just beyond us, Cary lit Owen’s sparkler, and the dragonfly spread his wings and flew off into a sky filled with blazing sparks.
Wednesday, August 12, 2009
Tuesday, August 11, 2009
It's been a great day. Errol has been drinking juice, taking his meds, his last iv is gone, his nasul canula is out, and we even took him on a spin in his wheelchair around the 6th floor. As the doctor said this morning, "Errol has turned a corner." Let's hope our house is right around that corner. The doctors even ordered a portable oxygen machine that Errol will take home that will be delivered tomorrow morning. We are so thrilled about Errol's progress that we are beginning to think the unthinkable, that he is going to leave the hospital soon!!!!
Hooray. At dawn, Errol took three ounces of juice and two important meds!!!! Yee haw. Let's hear it for Errol, the fighter.
Our little champ just ate two more ounces!!!!!!!!!
And now Errol has fallen back fast asleep.
Errol just drank two ounces of apple juice and fell fast asleep!!! This is a huge step forward. If we can get a few more ounces in him we can avoid the NG (Not Good) tube (which would be a big step backwards). Let's hear it for the Little Man! More (hopefully positive) updates (of gallons of gobbled juice) will follow...
Monday, August 10, 2009
Errol's last remaining iv blew this afternoon (it happens sometimes) and we spent a bad two hours trying to get a new iv in him. After three different nurses (including the one who saved his life back on day one of his life) gave him eight or nine nasty needle sticks and painful subcutaneous explorations we gave up on trying to find a vein. Errol didn't cry but once.
Errol is out of the PICU but he's not out of the woods. We can't get him to eat, drink, or take his medicine, and without an iv in him or a nasogastric (NG) tube down his throat and into his stomach, Errol can't heal. Errol is exhausted and has fallen into a fitful sleep (I can't imagine what he is dreaming about), and we're going to evaluate his progress in the morning and decide what steps to take next. Let's hope things turn for the better. Thanks for hanging in there with us on this bumpy ride.
This is a look at Errol's wound from his open heart surgery. Errol is such a trooper! We're only four days out from his open heart surgery, and he must be in tremendous pain, but since Saturday he's only been on ibuprofen for pain, and he complains less than me. Give it up for the Little Man!
Hooray! Errol is out of the PICU and in a regular room! They have taken out his central line and the only thing tethering him now is his nasal canula (oxygen) and the IV in his left arm. We are so happy that Errol keeps getting better and we are so very fortunate to be surrounded by so much love! Thank you, thank you, thank you all!
Sunday, August 09, 2009
Errol is having a good afternoon. He seems to be over his nausea and he's been smiling and playing peek-a-boo. The nurses had to suction out his nose and mouth but it's helped his breathing and we still hope to have him out in a normal room tomorrow. One of the best things we can do is to hold him up and try to get the gunk out of his lungs. He certainly doesn't seem to mind being in Mama's arms! Who would?
The doctors feel good about Errol's progress, but we'll probably spend one more day in the PICU before heading out into a regular hospital room.
Errol had a good night. He kept his liquids down, responded well to being weaned off his oxygen, and, most importantly, slept well! I think they might just move us out of the PICU and into a regular room. We'll know after the morning rounds.
Saturday, August 08, 2009
Errol's chest tube came out (you don't want to see the pictures) and so did his arterial line! One step forward.
- Move out of the PICU and into a regular hospital room
A good morning, so far. The doctors are pleased with Errol's progress and are going to take out his chest tube, which will make him feel better and allow him to sleep on his stomach, and his arterial line, which will allow him to put his favorite fingers in his mouth. These are all tiny baby steps on the road to wellness, but Errol is healing!
Friday, August 07, 2009
Errol is doing great! Doctor Hines came by on rounds this morning and wouldn't say a word about Errol because he didn't want to jinx his great progress. The color is coming back into Errol's face and he is looking stronger and stronger, in fact, Errol took one of his three IVs out this morning. We've been feeding him bottles of juice and goat milk and its made him very, very happy. The catheter and his pacemaker will come off today and we'll hope to pull his chest tube this evening. We are thrilled at our sweet boy's healing and feel so lucky to have him.
Errol's nurse said that he was the best urinator of any heart baby she had ever had! I told her he had been practicing. Go Errol! We've already hit a couple of goals here in the PICU. Errol has gotten his breathing tube out, he's off insulin, and we're hoping to get him out of the bed and in arms today. The doctors and nurses are extremely happy with Errol's progress and so are we. We'll keep you updated.
Thursday, August 06, 2009
Errol is keeping us on our toes. After a .25 mg injection of morphine Errol looked up at me, his eyes rolled up, and the color drained out of his face. Alarms started going crazy, the word DESAT flashed on the monitor, and six nurses, respiratory therapists, and doctors materialized out of nowhere. Errol had stopped breathing.
Errol is in the Pediatric Intensive Care Unit (PICU) recovering from surgery. His recovery has been excellent so far, and we've already passed a number of important post-operative milestones. Errol has tons of awful tubes coming out of his body, and it's terrible to see him in pain, but we are making great progress. Thank you for all your thoughts, prayers, messages, and hope! We'll update you as we go.
Wednesday, August 05, 2009
Errol's surgery is scheduled for 11:00 am on Thursday, August 6th. During part of tomorrow's surgery, Dr. Hines will stop Errol's heart, perform a procedure, and then restart Errol's heart. The whole operation should last about four hours, and Dr. Hines made the whole thing sound like a cake walk, but we are totally on edge. Errol, of course, had one of his happiest evenings in memory. Think of Errol tomorrow.
Tuesday, August 04, 2009
Errol's pre-op visit with the amazing, Dr. Hines is tomorrow, Wednesday, August 5th at 1:00. We'll get more details about Thursday's surgery then. Our hearts and eyelids are heavy. We hope Errol's doctors are getting all the sleep we are losing. Errol, of course, is happy as a clam. More updates to follow...
Monday, August 03, 2009
Going around Winston with Errol is like being in a rock star’s entourage (I guess).
People I’ve never laid eyes on come up and ask Errol how he’s doing (I always answer for him, which may be a bad habit to get into. Then again, if I perfect my ventriloquism it could lead to some interesting conversations.) Errol is definitely one of the biggest celebrities in town and it's rare we go out without a fan stopping him to say hello.
Recently, on a trip out of town, we stopped for lunch at a cafeteria. As we snaked through the line towards Errol’s first encounter with Jello (he loved it!) many of the patrons smiled, waved, and stopped to talk to him. As a sweet old grandmotherly woman smiled at him, Errol stared blankly into space. I threw my voice and Errol broke his silence, “What are you looking at you, you old bat?” The woman stared back in disbelief and Errol added, “Heard of Botox, Granny?” Errol smiled sweetly.
OK, so I didn’t really throw my voice. One day.
Back at the cafeteria, as our fellow patrons nodded and smiled, I noticed one older woman who kept wistfully looking at Errol. As she passed us she smiled and said, “He’s special.”
“Yes he is.” I said.
“I had a special boy.” She sighed. Her eyes moistened.
“What was his name?”
She looked intently at Errol.
“How old was he when he passed away?” I asked.
“He was 32.”
We looked at Errol. She thought for a moment.
“How old is he?”
“They really are so special.” She said.
“Yes they are.” I agreed.
We looked at each other and I looked at her husband who couldn’t look at Errol. She looked back at Errol and then they were gone.
As we finished our meal, I noticed them sitting a few tables away, not talking, stealing glances at Errol.
The world can be so heavy, but it’s lighter when there are others to share the burden with you.