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.