Walking!

Our boy is walking! Coley's gone from drunken steps and regular falls to cautious walks across the living room. Watch!

We are so pleased to report that a recent check-up with Dr. Marx went well. His oxygen levels are at 88%, growth is good, developement is super, and his smile can melt a glacier. We're hoping to put off his next surgery to age three or three-and-a-half; the longer he can wait the better. Six months until the next check-up.

Tea time!

Happy 30th Mommy!!!

My Mommy turned 30 today!!! So I helped Daddy make this video all about how special she is to me. It's also all about our three weeks on Port Hood Island, Nova Scotia. This place is really fun! I hope you like our special birthday video. Love, Coley

Port Hood Island

Coley loves Port Hood Island. No surprise. Everyone does. Lots of good sleep, sand, and snuggles. His first dip in the Atlantic took place in one of the warm tidal pools out back by big rocks. He prefers playing in the sand or with rocks to being in the water, though. He loves the front porch where he can play blocks, pick flowers and leaves, or harass his big sister Penny.

Here's a slide show of our first week. Back to Boston around August 17th. Miss you all!

Love, PACT (PennyAnnaColeyTed)

MO and OH Trip June 2009

We had our first family trip to Annada, MO then Cleveland, OH the last week of June. It was a fitting first trip for Coley going back to his "roots" to see where my father grew up, then on to where Anna was born and where her mom and dad are from.

Coley was fine with his first plane flights! Slept most of the way on each flight. Below is a slide show of some of what we did. Coley's great grandmother - "Nonnie Nonnie Nonnie!" as she likes to be called - was wonderful to stay with and is in LOVE with her Coley.



PS - Coley slept through the night last night from 9:20PM to 7:30AM! Ten HOURS!! Way longer than anything he's done ever. We started the more strict "Ferber" method yesterday...and it's working. Not fun at first has he cries, but each nap got easier, and hopefully it keeps going well.

Using the baby's blog for my own (not at all) evil purposes

Here is a recent radio interview I did for Wilderness Heals. Be sure to visit the event's website and sponsor me!

pedi checkup and early intervention update

Yesterday we had Coley's 9-month check up with his wonderful pediatrician. He weighs about 19 lbs and is about 27 inches tall! That puts him at 35th percentile for weight and 25th percentile for height, which is where he was at his 7-month check up, so all is well there!

Today we had a routine evaluation of Coley's cognitive, fine and gross motor, social-emotional, self-care, and speech abilities. He measures in the 11-14 month range for everything!! They called him "brilliant," in fact. I could have told you that...

9 months!

Seriously?? 9 months?! I can't believe it! Last year, this milestone seemed so far away.

Hi everyone! Here's an update from the other side of 9 months! He's crawling and cruising around in his own special way: with one foot and one knee. Even so, he's speedy and curious - watch out, Mom and Dad! No more plopping him down on the carpet to play. The boy is on the move!

He is eating pretty much anything and everything in the way of food - fruits, veggies, grains, meats, yogurt and cheese - and still nursing like a champ, too. He tried salmon last night, and likes it almost as much as his daddy (which is not very much). He's growing lots and fast - check out those arms!

He has 4 teeth: two bottom middle ones, then the canines on top, but not the upper middle ones! It's a little strange... I'm afraid we might have Dracula-baby for a while. Hopefully the middle ones will come in soon.

And sleep, well... sleep will come some day. A good night is when he's only up twice. He's still waking up three or four times before 7am. And I'm lucky if I can get him to sleep before 9pm. He's just too excited by his new found mobility and babbling language to sleep for too long! Fortunately he does take a nap or two during the day. And overall, he's a really happy kid! So the lack of sleep (compared to what the "experts" say he should be getting) doesn't seem to be making him too cranky.

Thanks, all, for following our story here. Here are some pictures and some video footage since the last post (6-9months old).



Here's the video!

88%

Our next visit with our cardiologist, the amazing Dr. Marx, is not for six months! Yippee! We had our post-op check-up today and Dr. Marx was thrilled with Coley's recovery and health. So much so, in fact, that we don't need to visit Chilren's for half a year! A little scary, but very good news. We'll still see his pediatrician, Dr. Laster, regularly.

Coley's blood pressure was a little low (better than high, where it was after OR). Weight is up to 16 lbs, 4oz - he was stuck at 16 lbs for over a month, but is now growing again. 26.5 inches tall.

His blood oxygen level got up to 88% very quickly - they could have gone higher had we waited. This is great news (think oxygen to the brain, muscles, etc). Hopefully after the Fontan surgery in two years he'll be in the 90s% (most people are at 98% or higher, Coley was in the 70s% prior to surgery). Dr. Marx said because Coley handled the Glenn so very well, that the Fontan should also go smoothly.

Below are three new video clips. Some of the cutest ever, I think.

PS - This website can now be accessed at www.coleywells.com !

Coley and Penny - new video

Here's a little video of Coley at 6 months with his big 4-year-old sister Penny! Our boy's recovery continues to go well. He's energetic and active. He's able to play more and more independently (if only he'd sleep more independently). He's pink and smiley! He's also a very lucky little boy to have such a patient doggy sister, as you will see in this video...

Playing on Sunday morning

We're H-O-M-E!!!!!!

We were discharged this afternoon, and just arrived home at about 6:00 after a stop at the pharmacy for Coley's meds. We are so so so happy to be here. I'm a bit nervous to be out from under the watchful supervision of the nurses. But I'm sure that will pass soon. We're now looking forward to a balmy weather, some walks, some sleep, getting Penny back from New Hampshire, and just enjoying a couple of days together!

In case anyone is curious, his meds are: Lasix, a diuretic to help his body process any extra fliud that might build up around his lungs or heart; Captopril to keep his blood pressure in check; and a small dose of Aspirin as a blood thinner. They are all orally given. He will be on those for the forseeable future; he'll outgrow the dose of Lasix and Captopril and then they'll reevaluate their necessity. Aspirin he'll probably be on forever.

Here's a minute of video with Coley letting you know how he feels about being home (and eating rice cereal). In general, he seems REALLY happy for the time being. It's kind of weird; he's really quick to smile and laugh. He's been reaching for things and playing like never before, shaking the rattle on purpose and hitting things to make noise. Let's hope he keeps that up!!

Okay, more soon. THANK YOU for your love and support and thoughts and energy this week and beyond. Really and truly, we couldn't have done it without you all there.

Friday... and going home?

While Coley is happily playing with my mom and his Sesame Street balloon, I wanted to update you on what's been going on today.

He slept fairly well last night. Down at 9pm, then up at midnight and 4:30 for comfort and to nurse. That time he stayed up for a good hour and a half before finally falling back to sleep. But then slept until he needed his meds at 8.

He was doing great for a few minutes when he woke up, but then, of course when they wanted to come in and do an echocardiogram, which he has to be really still for, he got really cranky and gave the echo tech and Dr. Marx a bit of a show. Made a liar out of our nurse and Dr. Marx who both told the echo tech that he was "a really easy going baby." Funny... But they did do the echo and it looks good: good function and flow. My mom took him down to x-ray, which will show whether there is fluid buildup around the heart or lungs. I think they were not going to do the x-ray, but he was doing a little grunting breathing this morning in front of Dr. Marx, so he said to keep it. Not long after the doc left, though, he had a HUMONGOUS poop. And stopped struggling! Of course...

They also just did another blood draw to check white blood cell count, which was a couple points high yesterday. That could indicate infection, but he has not had a fever, which would also be a sign of infection, so they're not too worried about it, just doing it as a precaution. Hopefully the results of the x-ray and CBC are good. Then we'll be able to come home this afternoon! Of course I'm a little scared for us to be alone with him, no computer monitoring his breathing/heart rate/sats, but it will be nice to all sleep in the same place comfortably again.

He's being really good right now! Maybe he'll take a nap. Me too. I'll let you know our discharge status or any other test results as soon I find out.

Oh, and thanks to all our visitors yesterday and throughout the week. We've had many! It is wonderful to feel so loved and cared for. Thank you.

Good afternoon!

I thought I'd write a quick note since I can sign in at the moment... it's still spotty.

He's having a nice afternoon so far. He had a bit of a rough morning, starting with peeling off his bandages - ouch! - followed by a blood draw and just being poked and prodded a bit. All that combined with being exhausted made for an hour-long crying session. But he finally slept for a couple hours while my mom stayed with him. I went home, showered, grabbed different clothes and food, and returned to find a smiling, happy boy! And my sister-in-law is here; it's great to see her!

They told us we would be going home tomorrow or Saturday. I hope he is doing well enough to be let go.

Ok, more visitors are here - another update later.

He's himself again!

Grandma (Mary) here; I had my camera ready when he woke up yesterday. No more tubes, no more drug-induced sleep. I haven't heard yet how last night went, but these pictures (a mere 48 hours post-surgery!) are worth thousands of words! (I have some little videos, too, but they were taking too long to upload, so I'll try again later when I have a faster connection.)

Step down!!

I'm writing to you from the general recovery ward, or "step down." This is a wonderful transition for so many reasons; first of course is that Coley is no longer in intensive care, is healing wonderfully, and progressing towards going home! As I write, he is cooing and playing with his daddy and two grandmas.

Another great reason to be here is that I can FINALLY log into the blog to post for you!

Our cardiologist came to check on him a couple hours ago and said that he'll probably go home Friday or Saturday. Of course not until he's ready, but he's on the quick road outta here. We're all saying that he seems like he's pretty much back to his regular self. He is still on some pain medication that's making him a bit more sedate than usual, but he does seem alert and he's playing with all sorts of things - we'll post some video soon.

I have some writings from yesterday (Tuesday) and this morning that I'll post explaining some of what has happened since we posted last on Monday evening.

3/4/09

Another beautiful, sunny, good morning. Coley had his chest tubes removed last night. He was a super champ for it all. Granted he did have a morphine cocktail, but the nurses said he’d get upset, but really he didn’t for long at all. Lucky Nabia and Scotland got to see it all… they showed up for a visit just in time. Pat and Dan came for a visit just after that, so they got to see a tube-free Coley. Except for the nasal canula with oxygen, he had only the IV in his foot, which wasn’t even connected to anything, the three stickies on his chest to record RR and HR, and the red light glowing O2 sat monitor. Pretty good after having so many other IVs and tubes in him just a few hours before.

He had a great night last night, woke up a few times, but was able to be calmed back to sleep. I got to nurse him, too… he seems to be back to normal in that department, at least! Hungry, hungry hippos…

Good morning!

Good morning. I came home last night so Anna could stay with Coley. I just talked to her and he had a second smooth night and is doing well. Phewww.

They pulled out the two chest drainage tubes at 6:30PM yesterday...tough little Coley almost smiled during the process as not-so-tough daddy almost fainted! So he's almost completely off the machines. Just monitors now. Anna's been able to hold him. In fact I just called her and she was breast feeding! He's also not as drugged up now - just pain meds now.

I can't type here long as I really need to get back to see them, but wanted to thank everyone for their amazing love and support. This has been a very hard time for us as you can imagine, but it's been made easier by so many of you. Most of all it's been made easier by brave Coley doing so well!

We're sorry this blog isn't accessible from in the hospital as we wanted to post more info for everyone, but none of that matters - Coley is doing well - that is what matters.

We're moving him out of CICU today!

3/3/09 (happy square root day!)

Good morning, friends! Happy Half Birthday, Coley!!!

It is a great morning: sunny, crisp, Coley’s awake and has had two bottles. He’s still uncomfortable (that’s probably an understatement), but is on some heavy-duty motrin via IV to help with that. They think that after the Glenn procedure, the patient has a wicked headache due to increased pressure in the head (as the resistance in the lungs is higher – yes, it’s complicated). He is not on any sedatives, though. And very little O2 to help him out. They’re weaning him off the O2 in preparation for moving him to step down. They’ll take out his chest tubes (draining the space around his lungs) later today, too, which will greatly reduce his pain and increase his mobility. Either way, though, they said we can hold him later, even with the chest tubes in, if they can’t come out.

So, I’m going to share a scary story from last night. Don’t read on if you don’t want to know… Last night when they extubated him (took out the breathing tube out of his trachea), he had some trouble clearing secretions from his lungs, throat, and head. He wanted to cough them out, but couldn’t muster up the strength, and it must have hurt to try. So they had to suction through his nose and throat over and over and over again. He would get so mad that he would freak out, hold his breath after letting it all the way out, and not take a breath in for many seconds. His O2 sats would plummet, blood pressure would spike, and give everyone a scare. Once, he “desatted,” meaning his sats went way down below 40, and he became bradycardic, meaning his heart rate slowed way down. That was a very scary moment, when the nurse (who was AMAZING) had to page the cardiac medical team, and they had to use the bag to give him breath. But he always came through it pretty much on his own, even when they bagged him they did it just as a precaution.

The main issue was just that he was in pain and so mad at them for ripping that tube out of his throat and lungs through is nose. Wouldn’t you be angry? Anyway, as the fellow who was just here said, “He has a strong personality and his was showing us that.” Yeah, Coley! Be strong, baby.

Finally...

Hi again, everyone. I'm down on another computer - couldn't sign in on the wireless connection, for whatever reason. Urgh.

I don't have much time because I'm about to faint from hunger, but here's the quick update. He's doing remarkably well. They're pushing morphine, chloral hydrate, and fluids to keep him pain-free, hydrated, and balanced. He looks very pink (funny how we didn't even notice he was anything other than perfectly pink!), and his O2 sats are hovering around 89%. Pretty sweet! He has sort of woken up a couple times and looked around druggedly. I can tell he's uncomfortable, unfortunately, but that's what the morphine is for.

They're hoping to extubate him in the next couple of hours - that is, take his breathing tube out of his nose and let him breathe on his own. I don't want to be there for that; it apparently makes them cough and sputter and cry and isn't too pleasant. BUT, that will be a major step toward moving him out of the ICU and onto the recovery floor. And it'll be nice to see his face again!

We'll let you know if anything happens. Thanks for staying tuned and sorry for the delay in posting!

-Anna, Ted, and Coley

All is well

Hi All,
Anna asked me to write this post. She is unable to sign into the blog herself.

All is well. Coley is done in surgery and it went well. He just got moved to the CICU and Anna and Ted will be able to see him in 45 minutes or so.

Let's keep sending our love and hugs.
-Auntie Nabia