What day is it?

They're all starting to run together.

James is lying in his bed, gaze riveted to his tv, mouth hanging open. The last 24 hours have seen a rapid increase in pace. The PICU doctors rotate as the days go by, depending on who is on call, and Dr. Coleman is back on duty this week. She was in charge of James for several days following his first surgery as well, so hers is a familiar face, and she's got a full-steam-ahead kind of attitude. Breathing tube out yesterday, drugs largely weaned, cpap mask off today, chest tube out. He's still swimming in wires and tubes, but they are mainly just IVs and monitors. He's awake, calm, and adapting well. He's still on morphine, which lends him a foggy and somewhat stoned expression, and his long-inactive little voice sounded pretty weak and sad initially, but his voice is strengthening now and he looks and sounds nearly normal.

I held him for a few minutes, but he was uncomfortable with the change in position it seems, so we'll have to wait a bit longer to cuddle.

Sometimes I feel like I'm in an episode of Grey's Anatomy. I hear a lot of nurse talk throughout the day. I've learned about a few obscure medical conditions that could totally have merited an episode. There's a Christina look-alike/act-alike doctor, and there's an actual Dr. Bailey. Most of James' doctors are fairly young, and look far more made-up and coiffed than me. Even after a 12 hour shift they don't look tired or ruffled. It's baffling. It's like...on tv...

Days 4 & 5: slow but steady

After what felt like a very long weekend with nothing new to say, Monday is here and the new week brings some fresh positivity :) James is still asleep, but he looks much better today. His swelling has gone down significantly and he finally is looking like himself again. Except, of course, for all the tubes and wires still in the way – he's not posing for any photo shoots yet! But it's good to see his face look normal again, and recognizably like James.

A little overview of what has been going on, and why it's such a complicated recovery process: the Glenn Procedure (surgery) on Thursday changed up some of the connections in and out of his heart, so that blood will from now on be circulated partly via a new circulatory route that bypasses his heart. Now that his heart doesn't have to pump all of his blood in and out, but will only have to handle a reduced load, it won't be so overworked. The new Glenn circulatory path moves blood, without requiring the heart to pump it along, by allowing natural pressures in his body to push it instead.

His heart looks great and the Glenn circulation system is successful. However, he's swollen with extra water retention, a normal surgical side effect, and he is also on a breathing tube. Both of these create extra pressure inside his body. The extra pressure then makes the Glenn circulation not work as well, so he needs extra aids – such as the breathing tube. He's sedated and kept deliberately asleep until the whole system is balanced well enough that waking up and wiggling around won't overtax him.

Each day, his body balances and adapts a little bit more.

Goals: His docs are planning to let him slowly wake up tomorrow, and have the breathing tube removed Wednesday. We're crossing our fingers!

Day 3 of PICU: waiting game continues

Still not much to update today, except that we all know James wants to take this recovery nice and slow. I think he partly just likes being waited on hand and foot, but I suppose he also just wants a break from the heavy duty stuff they did on Thursday.

Right now, he's relatively stable, with no de-sats in the last twelve hours, but he's pretty heavily sedated and medicated, with a pacemaker and breathing tube, and docs plan to keep him that way for at least the next couple of days. Their goal is to reduce his meds, pacing, and forced oxygen slowly over that time, so they can extubate him and he can begin feeding. Once we get that far, he'll have another few days of learning to eat again, and then we might be able to go home.

Here's hoping that James has a hungry belly when the breathing tube comes out :)

Day 2 of PICU: a waiting game

Not much to say today: James is still sedated and unconscious, likely until Sunday or Monday.

His stats were rather unstable today, and fell rapidly several times. It's not a major concern but a question of pacing the stages of his recovery. His doctors think he needs a few more days of solid, motionless rest before his body can handle the efforts of waking up and functioning on his own.

Out of surgery

The surgery is done, James is recovering in the PICU, and his vitals look good. He's stable but still unconscious until tomorrow. He needs to stay still as his stitches set and tubes monitor his first 24 hours of progress, so they've deliberately kept him knocked out and immobile (they've already noticed he loves to kick). He should wake up tomorrow (Friday) morning, and possibly even have his breathing tube removed by then.

We bundled him up on this cold icy morning, arrived shortly after 6 am to greet his waiting and eager team, and scrubbed up head to toe to escort him into the OR. Dr. Chen and team took fabulous care of the little guy. More updates over the next few days as he wakes up and adjusts to his brand new system... plus some description of what was done. Right now though, we're off to sleep!

the calm before the storm...

One week to go! Looking ahead

We went to Weill-Cornell yesterday for a marathon day of pre-op testing and paperwork. James had an echocardiogram, all his stats checked, vials and vials of bloodwork, a urine test, a chest X-ray, a vaccine... We left the apartment at 8am and didn't return home until 5. By then, we had a grumpy and tired little boy with bandaids on both arms, legs, and a foot.

Part of the pre-op was a chat with his surgeon, Dr. Chen, about the planned surgery: process, risks, side effects, recovery, long-term expectations, the works. We don't see Dr. Chen regularly – he surfaces just for the surgeries – but he is very clear, concise, and informational when we do check in with him.

While the Glenn Procedure has several different iterations, James is having the Bi-Directional Glenn. In addition, one valve has been leaking a very small amount since birth, a minor problem they've been keeping an eye on. During this surgery, they'll try to reduce or repair that leaking as well. His heart will be stopped and he'll be placed on a bypass, receiving blood transfusions, while all this is done.

Although this is somewhat risky, Dr. Chen seems optimistic about the surgery and James' case. Kids who undergo this may have a range of complications and degrees of severity which affect the possible outcome... he seems to think that James is a good candidate and has nothing particular to worry about.

James will go into surgery first thing in the morning, January 24, and should be in the hospital at least a week to recover. It's likely recovery will be more like a week and a half. He'll be in the PICU, where he spent the first few days of his life, and where visitors are limited to 2 at a time with parental permission.

Due to the flu epidemic, we'll be strict about upholding the visitation rules and monitoring who has access to him. Anyone who wants to visit, CALL AHEAD to plan with us, be careful about coughing or coming if you're feeling sick, and be prepared to wash your hands before all contact. The whole hospital is on alert, so we'll do our best to avoid spreading germs.

Surgery Scheduled

The Bidirectional Glenn procedure (part 1 of the Fontan) is scheduled for January 24. This is James' second open heart surgery and will be a bigger deal than the first. They'll be starting a two-step process to redirect the circulation in and out of his heart permanently. He'll have the same surgeon and team he had in June, Dr. Chen and his cohorts, and will be in the hospital for about a week. We'll update accordingly as he recovers.