Ryan’s Fontan – Post op day 6

It’s day 6 of our post-op staycation after Ryan’s Fontan procedure, and boy, was it a doozy. We started it by waking up early in the morning – – like say 4:30 ish and never really going back to bed. I tried to ignore Ryan’s call for water and let the nurse take care of it (which she did). Getting a good night’s rest in-house is almost impossible, especially when you have a little boy who is ever so cranky from lying in bed for 6 days straight. Understandably, of course.

He was also cranky because his left lung was almost collapsed from the weight of fluid building up. If you remember we removed the surgical chest tubes early because they weren’t draining very much any more and were very, very uncomfortable for Ryan. He was digressing from the pain and discomfort. We knew the risk would be that we’d need to insert new tubes if he started having more fluid.

Tuesday morning’s x-rays showed a pocket of fluid impeding breathing on the left side so we set about getting a chest tube placed. They did the procedure around 11 a.m. and almost instantly after the chest tube insertion 700 ccs of blood came rushing out…. 700 ccs is an incredible amount – – and it was blood, not fluid. I almost wet my pants when the nurse told me the amount.

The team thinks the blood thinner made Ryan’s heart or lungs weep blood into his body…. so he was technically bleeding internally from his surgical wounds. Because we don’t think his fenestration tube is being used anymore by his fontain conduit (I know, I know, so technical) the team immediately stopped the blood thinners.

To back up for a second, the Fontain conduit is the gortex tube the surgeon connected to Ryan’s inferior vena cava to elongate it enough to reach the pulmonary arteries. A fenestration valve is placed in the conduit to allow blood to be released back into the heart in the case the pressure is too high – – to act as a pressure valve. Due to the anatomy of Ryan’s heart, the team was unable to make a valve and had to place another tiny, tiny gortex tube to act as a conduit back to the heart (his Fontan conduit is outside his heart instead of inside – – this boy is so complex, people). There was already a fear that the tube would clot off, as many of them do, so blood thinner was administered. With Ryan’s high (read: normal) oxygen saturations post-op, the team is pretty sure the tube never really did it’s job, however, Ryan’s body responded well to the surgery and it wasn’t an issue.

Until today, of course, when we realized he was bleeding internally.

He also blew two of his peripheral IVs (PIVs) and had to have them replaced AND his fontan line (which is a central line into his liver measuring pressures that they can also push meds and pull blood from) malfunctioned and then cracked externally. The surgical team came in to repair it this afternoon.

So yeah, there’s that.

Right now, it’s almost midnight and Ryan’s been uncomfortable and advocating for his own removal from the hospital and having all his lines pulled STAT since about 9:30. Instead the team is working to give him something to make him more comfortable. I’m praying that he’ll be able to sleep tonight (and mama, too, just sayin’).

I’m holding up but definitely feel the weight of having Ryan so uncomfortable. I’ve already lost track of which day is it and have considered writing not only the date, but the day of the week on our white board just so I don’t feel so stupid when I have to ask if it’s Tuesday or Wednesday.

Even given today’s ordeal(s), I’m encouraged by Ryan’s condition. Things could have been precarious with the significant blood loss but instead it went as good as can be expected. They replaced the blood loss with a transfusion and his heart rate came back up into the normal range. He is also breathing unassisted with both lungs (although he is still on oxygen support).

Please pray that the right chest tube can come out soon – – it’s draining very little at this point and it would make it so much more comfortable for Ryan. Right now, he’s stuck lying on his back without a way to turn to either side.

Please also pray that his left side gets significantly dryer as well….

And continue to pray for no viruses – – no further complications – – and no more bleeding… pray that God would touch his body in ways we cannot see for we don’t always know the ways to pray.

As always, we thank you so very much.