First Steps

Almost two years ago, we watched with joy and amazement as James took his first steps - at the park and into Daddy's arms.

I had that same experience again yesterday. James has gotten so much stronger this week, and is such a trooper about pushing himself. He cries throughout each standing session, and his little legs shake and buckle beneath his weight. Yet as soon as he sits, I ask if he wants to try again, and he says YES. Yesterday he crossed a hurdle: he stood entirely on his own, only lightly holding my arm for balance, and straightened his legs. Legs that went unused for almost 2 weeks supported his entire weight for over 10 seconds.

Just imagine, if you can, lying sedated with your legs bent for so long, with barely any food, then trying to unfold them and stand up. It was an awesome moment to see him straighten up, feel him let go of my arm, and stand on his own.

He tried to take a step, and even though he needed help, he initiated the motion all on his own. He has a "this is hard, but let's go for it" attitude. He says he wants to walk "to the car". One mountain conquered, and the next already underway :)

His pleural effusions are still leaking pretty consistently, though yesterday showed some improvement. Doctors have emphasized that this is a long, slow process, but James' heart is healing wonderfully so they are no longer worried... He will eventually kick this too, and we will go home.

Building Endurance

At every surgery, James has some setbacks.

After the first surgery, the day he was born, he had to gain back the one-third of his weight he dropped during surgery, he had to learn to eat because, unlike normal babies, he never was given a chance to breastfeed when he arrived, and he had to learn to breathe on his own again.

After the second surgery, again we had some of the same issues as above, mostly about eating, having to put him on a naso-gastric tube to ensure he'd get enough calories, but also cognitive, psychological, and physical development. James needed to learn to be an infant: talking, walking, playing are foreign things, and his second surgery set him back to just about newborn status.

No small feats to overcome, these setbacks, even for healthy babies.

This time around, James awoke from sedation hungry, but silent, and immobile. He wanted to eat, he wanted to drink, like a newborn, but he couldn't (or wouldn't) speak, and he could barely lift his arms.

In the last week, James has begun to come back. He is talking more, playing more, moving more, and still very, very hungry. Still no classic smiles from James, but he is showing levels of determination, perseverance, and grit that I don't know I have ever seen in grown-ups. He has been, and continues to be, one of my greatest heroes.

We still have a long way to go medically before James can come home -- weeks, possibly months, before he's stable enough to take his pleural drainage tubes out -- but he has already come back to us in spirit, and I am positive he will continue to amaze us all as the days continue to fly by.

Split family

Elise hit the 6 month mark on July 14, the same day James had his Fontan. This milestone got lost amidst the activity, but not forgotten: I took a series of photos of her the day before to commemorate her little 6 month old size and personality.

Given the extended hospital stay and uncertain timeline, we finally decided to send our baby to stay with Grandma and family for awhile. She's going to have a great time, but we miss our little ladybug, and hate that we have to be split apart right now.

So tonight I'm looking at photos of my smiling, giggling, crawling, jumping, teething, chewing, grabbing, arm-waving, growing girl.

Weekend Wrap Up

We had a long and determined conversation with our doctors on Friday about leaving James alone. Despite all their talk about how chylothorax takes time and he needs rest, the ICU is not restful and the constant regimen changes and status checks and blood work were wearing him out. People were in and out of his room nonstop, and he was terrified, and his blood pressure and heart rate and other stats were unable to stabilize.

We said: STOP, remember he is 3 years old, your bedside manner needs serious work, and quit scaring the daylights out of him!

So, he got a quiet, restful weekend. His team is being quiet around him and limiting interactions. He got some calming medication to help him adjust. He needs to have the energy and drive to fight this, and he's getting that back. He spoke a ton today! Thomas, bye bye, grandpa, funny, water, marker, yes, bumblebee, yellow, and more. He read The Very Quiet Cricket and said his favorite part, "not a sound". He had several visitors and took another wagon ride and sat up for a long time.

No walking yet, but his left leg has been very swollen so the IV came out today (there's a new one in his hand, but you win some, you lose some). Hopefully that will let his leg improve enough to try some standing tomorrow. Walking later this week?

This condition can take weeks to heal so we're hoping for sooner rather than later... and praying for no further complications.

Deep Breath

James had a second chest tube inserted last night (Thursday) to drain his left side. Over a liter came out, most of it almost immediately. His chest X-rays looked much better today, which is great: all that fluid needed to come out. However, he's otherwise unchanged: still leaking at the same rate, stats all still the same, oxygen has been hovering around 90-92 (when it should be more like 98). After a day of reintroducing food, he's back to a no-food diet with TPN feedings, and they have been discussing reinserting a central line. The more they poke at him, the more stressed he gets, but stress increases the leakage and directly contributes to this condition. It could be a week, or several weeks, or even longer of hospitalization... it could be months of return visits... it could mean other things that we don't fully understand yet.

This has been confusing, and scary, and I haven't processed it all yet so I'm not going to write anything else about it right now.

Instead, I'll share that James is getting stronger about sitting! He had another chair-and-Ipad session today. He took a ride in a wagon and looked completely adorable. He practiced standing. He still didn't really manage it, but he put weight on his feet for a few whole seconds. He has new headphones, and they seem to help him relax and tune out all the doctor babble over his bedside :)

The Irony of Eating

A couple of days ago, James was diagnosed with chylothorax, a life-threatening complication from his Fontan procedure, where fat and lymphatic fluid from the lymph system drains into the lung cavity, making it difficult and eventually impossible to breathe. They discovered this from the fluid he's been draining from his right pleural cavity. And when they found out, docs were scrambling around all day, arguing about best courses and steps to take, and all the while they kept James awake and annoyed, further annoying him by trying to find new places to put IV lines.

Apparently, the only way Docs could agree on to cure his complication was to take him off food and water (i.e., starve James) and put him on IV nutrition for the next 24-28 hours, then transition him to a low-fat diet. It's a bit ironic and silly that, before the surgery, James was on a high-calorie, high-fat diet, doctors said, to help his body be better prepared for recovery, and now that he is recovering, the thing his body needs is the exact opposite.


So, they've had him on IV nutrition for about 36 hours, and today, his pleural fluid is looking clearer, which is good, but it still has a high lymph count and the quantity hasn't lowered, which aren't good. He also is showing increased fluid in his left side, which is also not good. This means James might have another procedure tomorrow, inserting another chest tube in his left side, so both sides can drain freely.

Medically, James is staying the same: critical, but stable, with a long way to go before he can come home.

Psychologically, James is coming back! This morning, he sat up in a chair, played with his iPad and stickers, drew with crayons, and said some words. He's much less guarded about people coming into the room, and he's occasionally smiling, even giving some of his nurses and doctors high-fives.  

Not so fast

It's been one week and a day since James arrived at the hospital for his Fontan, and it seems he will be here a while longer still.

The complications and "rough start" after the Fontan are slowly getting better, but he's not done with them yet... and that delay is starting to be an issue in itself. Immobility and swelling are not easy on the body.

The fluid leakage (pleural effusions) in his chest are still lingering around, and the leaking actually has picked up pace lately. Even worse, he's leaking fat - a condition called chylothorax. Basically, he started eating over the weekend, but his body is still so waterlogged that the pressures in his body aren't allowing his body to drain properly, so fat is entering his lung cavity and making it more difficult for him to breathe and recover. This is not good, and it means another week or so in the hospital at minimum, and he's back to a no-food regimen with IV instead.

He's been starting therapy to sit, stand, and walk but we didn't get far. Sitting went ok, standing was attempted but he didn't actually put weight on his feet, and so walking clearly is not going to happen yet. He barely moves his hands still, and even his favorite activity (the ipad!) is not inspiring him.

He is covered in bruises and scabs, and the amount of swelling makes it hard to get IVs and needles in him as needed, so he's been poked and stuck all over the place. The swelling also makes it uncomfortable to move, but without moving the swelling doesn't go away. No food for 48 hours won't help him want to exercise either.

We had hoped for an uncomplicated Fontan, but that's not what we got. The first couple days had his doctors scared. The pleural effusions are turning out to be a big complication, which could potentially mean weeks of recovery still needed. Next steps (and hope) are to see if 48 hours without food fixes the chylothorax. Best case scenario, this approach works and his fluid keeps draining and 1 more week in the ICU will be enough.

He is fully awake now, no longer in a fog, and he's clearly scared - but he is also so brave about all this crazy activity around him. He appreciates all the love sent his way!