4 Oct Pics

Update!

Had a great appointment with Dr. Marx this morning. Coley is doing SO well that they don't need to see him for 6 months! Crazy! His O2 sats are 96%! His lungs are clear and there's no sign of an enlarged liver. They cut his dose of diuretic (lasix) in half. That is GREAT, because it was really interfering with sleep at night (he was waking up to pee several times). Now we only have to give it once a day. Yay!

Have a great weekend!!

Coley Jammin'

Back to school!

Coley is allowed to go back to school! I'm supposed to stay with him to help avoid any impact to his chest (trips, falls, balls, etc). I'm happy to be here and so is he!! The Apple Orchard School is a remarkable place. I can't explain everything that makes AO so special in this short blog post (published from my iPhone!). But in short, the kids are just allowed to be kids. They have just the right amount of freedom and structure. They explore and have adventures outside in all weather. And they're gently prompted when needed to be good citizens.

I'll take more pictures throughout the day and write more later about how it goes. He's happily playing with oobleck right now!

Post-op visit

Great post-op visit this morning. His x-ray showed nice dry lungs! Woo hoo! His liver and belly are still a little big, basically meaning the blood is getting backed up in his organs because the tube now connected to his IVC (veinous return from lower body) is smaller than where it was going before (right atrium, I think). His O2 sats are at 93! They think because the sats are so high and the belly is still a bit enlarged, the fenestration they put in the gortex tube connecting his IVC to pulmonary artery may be closing. It was smaller than most to start with, however (under 2mm instead of closer to 3-4pm), so it's possible that's the reason.

Long story short, he's doing great. We're at the aquarium now, so I can update more later!

Coley's been home seven days now. We're trying to get him in walking shape and back to his old sleeping routines, but with little luck. When it comes to walking, he wants "UPPY." When it comes to sleep, he wants "MOMMY!" But being stressed about sleep or work is a blessing after being stressed about Coley's special heart for so long.

More walk and more sleep would be nice for all involved, but we're so happy to have our dear son home and back to his cute and silly ways. Someday sleep will return, we hope, but for now we're counting our blessings and enjoying time together. We have a check-up tomorrow with Dr. Marx to see if Coley can start up school this week.

Here's a pic of our big boy helping rake for the first time yesterday. It's interesting how with much more oxygen in his blood, his cheeks aren't as rosy as they always used to be. Maybe that cheekiness is just spreading out more?

Here's a great old video of Coley when he'd use the word "Ung-aaa" to mean about a dozen different things. Can you figure them out?

Coley's HOME!

Anna and Coley got home at 4PM today!!

Sunday update

Nothing much going on here. Quiet on Sundays. As it should be!

Coley's chest x-ray from this morning still looks a little too wet. So he's getting tons of diuretics to try to pull that fluid away. He's also pretty much retaining all the food & drink he eats - he's had half a kilo weight gain since yesterday! But he's moved things through a little (with lots of effort. Poor guy.).

The plan is still to go home tomorrow. We're scheduled for a discharge echocardiogram between 8am-1pm (the only thing that trumps that is an emergency echo). So that's a good sign, but I wouldn't be surprised if we were told to stay until the end of the day so they can push the diuretics and get another chest x-ray.

Other than a very full belly, I'd say he's feeling like himself again! He's been driving all around the cardiac ward. We had a visit from his friend Sari yesterday and went outside to the Prouty Garden. What a haven! He also decided to decorate his pressure bandage... And here he is with a cookie bigger than his head!

Thank you Dr. del Nido!!

Resting Boy

Coley's sleeping well! And if anyone deserves some rest, it's him. Yesterday, he had a solid 2.5 hour nap during his usual afternoon slot. And right now he's almost 10 hours into a 10PM - 8+AM rest. Fewer and fewer nurse interruptions, no more chest tubes, Bertucci's pizza, and a nice quiet room to himself are to credit.

Some nice visits last night from Coley's radiologist (who's son is in my class!), Dr. Ester, Dan and Kerri, Modern Family, and Dr. Marx.

Dr. Marx continues to be pleased with Coley's progress and says we can go home on Monday. Others said maybe Sun or even today, but we're happy Coley's lead doctor is on the cautious side and we'll only leave when they're sure he's ready.

Check out this photo of Coley's oxygen levels! 95%! We were so used to numbers in the 80s, that seeing them constantly in the 90s is pretty special. His red and blue blood are mixing much less now in his single ventricle. Less mixing is what this is all about. They're usually right around 92% now, and occasionally higher. In six to twelve months, when a pressure vent (fenistration) on the new gortex tube in his heart closes, his oxygen levels will go even higher.

No more chest tubes!

Yaaaay! Just got back from removing Coley's chest tubes. He was such a champ. He screamed through the whole thing and sweat through his hospital pajamas, but they're out! He is SO SO SO much more comfortable. The next big thing is to keep him fed and hydrated and get him up and walking around. I haven't heard anything about going home, but it's possible it'll be tomorrow - he's doing so well!

This morning getting ready to take out his chest tubes was a bit of a fiasco... At about 8:30am, they came and told us not to let him eat or drink anything in preparation for doing it, saying they'd do it around 10:30. Finally at 11:30 I went to ask what was up. He was saying he was hungry for the first time since being here and he hadn't eaten anything since last night's dinner. They told me they'd do it at 2pm, and to try to get him to drink clear liquids for the next 15 minutes until noon. So we tried to get him to drink as much as possible, which he wasn't really into. At about 12:15, the RN came in and gave me the option of removing the tubes with only morphine or morphine plus versed (that's the medicine they needed him to have nothing by mouth for 2 hours before). Doing it with morphine only would mean doing it much sooner (not waiting until 2pm). Also afterwards he wouldn't be so out of it and could eat and drink and play. So that's what I opted for, and that's exactly what he's doing now!

More later...

Visit from music teacher Evan!

Thank you SO MUCH Evan for stopping by!!!  Coley and I and the grandparents thoroughly enjoyed your visit.

Chest tubes coming out today!

We just have to go get a chest x-ray first, but apparently Coley's surgeon wants the chest tubes out today! That's great news - they've gotta be painful. I hope he's really ready, because putting them back in would be torture. They hope whatever fluid remains can be taken care of with diuretics. More soon!

Out of ICU

We moved from the Cardiac ICU to "The Floor" (or Ward) at 2:30PM today. A big important step in the right direction that happened pretty quickly, thank goodness. Coley looks great! So much closer to the Coley we know! He's even starting to talk "normally" with his old voice and spirit.

No one-on-one nurse care here, but have a view of a crane right out side our window to watch and a roommate. The crane drivers just climbed down 16 flights of ladders!

It's mostly about pain management now (he's very sore) as well as digestion (he's bloated up and doesn't have much appetite because of the morphine). Coley is also not wanting to use his diaper as he's potty trained! So he keeps holding it in a bit too much and we beg him to pee in a bottle-bucket thingy. He doesn't want to revert back to diapers, the good boy!

The other big project is getting his lungs drained. There's a steady flow of fluids that we hope tapers off quickly so these painful tubes can be removed. The flow rate is perhaps the biggest things his doctors are watching.

Last night went well for Coley with more IVs removed, gassy tummy getting better, and six hours of cuddles to fight the discomfort. The narcotics work much better than daddy nuzzling, I found.

I go back to work tomorrow to catch up with my other 14 kids! They sent Coley a beautiful card yesterday. Lots of muffins today to enjoy as well as more time with grandparents. If all continues to go well, hopefully we'll be out of here by Monday. Seven days here is plenty. Coley wants to get back to school!

Good night, good morning!

Coley had a good night last night and it has been a good morning so far. Ted stayed here in the ICU with him and I stayed next door at the Children's hotel with Hylah. Ted's parents stayed at our house to care for Penny and the garden.

Coley's bed, machines, and Nemo balloon

The greatest news is that he's breathing on his own now, no longer on the ventilator. That's one set of uncomfortable tubes gone. We're so grateful for the slow progress. He's also not on major pain meds or sedatives anymore, so he'll be slowly waking up this morning. We've got a nice Nemo balloon at the foot of his bed to distract him when he does wake (see the photo from behind). He's been stirring a bit and trying to grab at the oxygen cannula in his nose, but not fully waking. I'm so glad he's sleeping. He's going to be pretty unhappy when he does wake. But as he wakes, he may get more morphine to keep him calm, and the nurses will start taking out more of the annoying tubes and lines.

The most uncomfortable part of all the equipment is the chest drainage tubes, which are inserted into the pleural space around the lungs. Fluid buildup there is one of the most common complications after heart surgery. Those drainage tubes will have to remain in for a couple more days. They're not draining too much fluid anymore, though, which is a good sign and it means they'll be out sooner than later. He's also part of a study testing one of two drugs (or a placebo) that may increase pleural drainage and help him recover faster. We're hoping he's on one of the drugs and that it's working!

If you're curious about the guy who was inside Coley's heart (amazing!), check out the video on the homepage of Children's Hospital. His name is Dr. Pedro del Nido. He is truly a miracle worker and someone to whom we will forever remain indebted.

We'll post more updates as things progress. Thanks for staying tuned. Every time I think of all of you wonderful people out there reading about Coley, I get teary. Thank you for all your love - we genuinely couldn't manage all of this without you.

Life-affirming love

Friends and Family,

Thank you for the outpouring of love and support. Your emails, cards, meals, dog walks, calls, prayers, and more leading up to today were all so perfect. They carry us and help us carry Coley.

Coley has several days hooked up to machines before he's out of here, but it sure feels good getting past this morning's surgery - a stress we've battled for over three years.

Dr. del Nido said that Coley did great! He was able to get off bypass without meds after 1.5 hours, all the "plumbing" fixes worked well, valves are functioning properly, heart rhythms are solid, and pressures in various chambers and the lungs are good. (Google "Fontan Procedure" for the details or "Single Ventricle Heart".)

It's amazing seeing his oxygen levels at 99% and 100% as they used to always be in the mid to lower 80s when resting (and 70s when active). This 99% figure will come down when he's off the breathing machine, then slowing climb back up. 10-15% more oxygen in his blood will help him be even more cute, charming, and fun than ever before! (I could use an extra 15% O2 right now.)

Now he's had five hours of tinkering in the CICU. The team is working to get all the numbers in balance with blood pressure, sedation, pain meds, and more. He'll be sedated until tomorrow morning when they take out his breathing tube and they need him to wake up. It's a scary picture seeing him hooked up to dozens of tubes, wires, and computers, but we were ready for it (unlike last time).

The doctors and nurses here are amazing. Everyone we've interacted with is so caring and helpful. A day at Children's Hospital is an incredible journey of hope, heart, and the human experience. It's intense, but makes you feel so fortunate for all you've got and for the love and ingenuity we humans are capable of.

Thank you again for the support. We're not done here, but are feeling much better about dear Coley's health. As grandma Tish wrote to me in an email yesterday, "It is really life-affirming to be the focus of so much love.....and that's what makes the world go 'round." Indeed.

Anna, Coley, and I feel your love and we thank you.

Love,
Ted

Done!

Surgery is done. Just spoke with the surgeon. What an amazing thing he just did for Coley and our family. Immense gratitude to Dr. del Nido. He said Coley did really well and everything looks great. We should be able to go see him in the CICU in about 45 minutes. Wow. What a relief. There are still hurdles ahead, for sure, over the next few days. But this was the big one.

Now the real surgery begins

They just came to tell us that he is on the bypass (heart-lung) machine. It took a while to get in there through old scar tissue. Now they can start working on his heart. Will update again in a couple hours.

Just went in

We'll update when we know anything.

Cath is complete!

Coley had his cardiac catheterization this morning. It was a longer one than last time - about 3 hours. He did great leading up to it - didn't seem nervous or scared. Everyone is so nice and comforting here! (The nurse he's with now returned back today from maternity leave after having twins! She's great.) He drank his "sleeping medicine" with very little complaint and it definitely worked! He seemed completely stoned within about 10 minutes and they wheeled him away at about 9am...

Reading before sleepy time.

Ted and I hadn't eaten because Coley couldn't eat and we didn't want to torture him. So after we sat and cried for a tiny minute, we went down to the lobby for breakfast and met my dad. We went back to my dad's office to read, watch the Wire, and wait for updates. Lovely 7th floor corner office with a view. Thanks Dad!

Watching TV, waiting for the meds to kick in.

Cherry popsicle after the cath.

He was finished by about 11:45. We had to try (*try*) to keep him still and his legs straight as he was coming out of the anesthesia, but he was pretty antsy. He really wanted to get out of bed; kept saying "I'm getting down! I'm getting down!" But the nurse let him lie in my lap in a chair and we watched an episode of Dora. Then he seemed to calm down and be still for a good hour or so. He finally got back in bed and had a popsicle. That seemed to perk him up a lot and now he's sitting up, having juice, and playing with a new toy the hospital gave him.

We just met with his cardiologist and the surgeon and they are very pleased with what they see. They say he's in a good position going into the Fontan procedure Monday. The pressures in his heart and the adjoining vessels are good. They coiled off (closed off) one collateral vessel in preparation for Monday. That will keep the pressure where they want it when they hook up his new connection Monday. (They'll be connecting the inferior vena cava to the pulmonary artery so the blood returning from the lower body gets oxygenated in the lungs before it returns to the heart).  

They told us we'll be able to go home tonight if he's eating and drinking ok and he gets a couple doses of antibiotics. He has to stay still in bed until about 5 or 6:00 though. And then we come back Monday morning. He'll be the first case, meaning into the OR at 7:30, meaning we have to be here at 6am!! That means no traffic, which is nice, and it's not like we're going to be sleeping anyway... Also, the surgery will take longer than last time, too, for a number of reasons. More like 4-5 hours. Last time it was only 45 minutes!

As for Ted and me, we're just relieved this next step is over. A cath is pretty routine, but it's heart surgery, too, and not without risks. So it's nice to check that one off.

Thanks for looking in on us and for all the love we know you are sending. We feel it, truly we do. Thank you. 

Time to dust off the old blog...

Coley, w/ his lady-friends and the pink dump truck cake he requested.

Welcome back to Baby Bear's Blog! It's been a long time... so long that Baby Bear is no longer a baby! He just turned three at the beginning of September.

The reason for starting up the blog again is that the much-anticipated second surgery is around the corner. In anticipation of what we are about to go through these next few weeks, we made the most of our summer, filling it with friends, family, beaches, fun, travel, and a
big birthday bash for Coley. Pictures of all that fun stuff you can see on Facebook. But we are not going to use FB for surgery updates - just this site.

The surgery will be Monday, September 19th. Less than a week away. It all starts with a day of pre-op testing this Thursday, September 15 and a cardiac catheterization Friday, September 16th. We may spend the night at Children's Friday, but last time we were able to go home. We're hoping for that and feeling so grateful to live 5 minutes from the hospital! It's the exact same schedule as last time, though that doesn't help me remember it any, since my memories of March of 2009 are totally fuzzy from worry and sleep deprivation. I just read our old posts to try to remember how it went!

Before the hospital adventure starts, Coley starts school tomorrow! His class goes for half a morning the first two days, then starts full mornings after that. He'll get to visit for the first day, then will probably be out for the next two weeks. He is SO excited for school, so I'm glad he'll have that to look forward to as he's recovering. Then Thursday, the hospital adventure begins. Check back here for updates. We'll post as often as we can. Thanks for continuing to think of Coley and sending us love.

-Anna