Once Leo got his heart transplant, the heart itself did very well and acted like a typical transplanted heart. Since it had been sitting on ice on the way to Denver from where it was retrieved, it remained stiff for a few weeks which is normal. Leo remained critical for the first few weeks after his transplant. Typically when a child receives a heart transplant, they are discharged within about a week. Leo was still intubated a week, then two weeks, then three weeks later. His recovery was slow and not always linear (true progress rarely is). Though disheartening and frightening at times, a slow recovery was not surprising given his history prior to his transplant.

One major barrier to his recovery was the recurrence of the chylothorax. Since this could cause major problems depleting an already immunocompromised baby of antibodies and protein, the surgeon wanted to act quickly. Less than a couple of weeks after his transplant, Leo returned to the OR one more time. The surgeon performed a mechanical pleurodesis on the other side (one side was done while on the VAD). He also closed up the non-healing site where the VAD had been removed when he got his transplant.

I anxiously waited when he returned back to the CICU to see if the fluid would return. As much as we had hoped the pleurodesis would cure the problem, the chylous began draining from Leo’s abdomen now that it had nowhere to go in the pleural space. This is when things got frightening. The chylothorax in and of itself isn’t dangerous as long as the fluid can be drained. But as I mentioned above, a baby’s body can only take the loss of proteins and immunoglobulins for so long. The doctors were concerned and so was I. Which meant I had to work extra hard at finding things to be grateful for each day and to keep a positive attitude for myself, Derek and especially for Leo.

Leo’s transplant doctor brought an idea to the table for an intervention that could be helpful in stopping the chylothorax. There was no risk to it and I was all for his idea. Within hours of this intervention, the drainage slowed. The drain was clamped as long as Leo tolerated it. Miraculously, he did. The chylothorax resolved within a couple of days and recovery went fairly smoothly after this with just a couple more hiccups along the way. Just over a week later, Leo was extubated and tolerated feeds for the first time in months. We had no idea that we were just a few weeks from Leo’s very own Independence Day: a CICU discharge to the CPCU on the 4th of July!

Stay tuned for more blog posts and remember to check our COTA for Team Leo Facebook page for upcoming events!