I walked into Lily’s room this morning and got told that she had an amazing night. She only needed to be sedated once (as opposed to the 2 or 3 times which had become the norm) and they were hoping to fully pull her ventilation tube that morning. I was shocked and a little doubtful until I looked at her respiration monitor and saw that the numbers we had been hoping for were actually up on that tiny screen. The nurse today, Tori, said that they were just waiting to hear what the doctors said about the chest x-ray she had that morning but that she had stopped feeding her and had already given her half a dose of ativan to get her ready. I was over the moon and Mommy was super excited too when I texted her at work to let her know.
While we were waiting for the doctor’s to come back, Tori told me that they had decided to change Lily’s formula during the night because of a problem they had discovered. She showed me her drainage tubes and explained that what was coming out of her was not the right colour and it was pretty high in volume. She went on to explain that they were pretty sure that Lily has something called Clylothorax. The fat from your diet is carried through your lymph system to a vessel – about the size of strand of hair – which dumps the fat into your blood stream. In cardiac surgeries, sometimes this vessel gets nicked and it causes the fat to drip into her chest cavity. The hospital has a specialized medium-chained fatty acid formula (as opposed to a long-chain fatty acid that’s found in store brand formulas) that actually skips that vessel while it’s digesting and avoids this problem. We don’t know how long that will take to heal, so for now we’re on this new stuff.
The doctor’s finally came back and told us (myself and Tori) that the x-ray was showing fluid around Lily’s lungs (a plural effusion), which could make it hard for her lungs to expand and harder for her to breathe, so they were opting to postpone pulling her tube until after they were able to do another x-ray and decide between giving her an infusion of a diaretic (if there was only a little fluid and it would help her drain it naturally) or inserting a chest-tube, which would drain the fluid directly. A few hours later, filled with visits from 2 Grandmothers, a Grandfather and an Uncle Jeff, the x-ray was done and the chest tube was put in. At first they didn’t get nearly the amount of fluid out as they had hoped, but then realized that the chest tube line was kinked so they had to redo it. Once it was finally done, the fluid came pouring out and as we left for the night, they were incredibly happy with the day’s progress. In the end, they thought that the Clylothorax was also the cause of the fluid around the lungs (since it had probably been dripping since the surgery 5 days ago). The hope was to keep working on getting her oxygen back to where it was this morning (they had to raise it when they did the chest tube) and hopefully (fingers crossed) pull the tube at some point tonight or first thing tomorrow.
We’re starting to really understand that this whole thing is all about the up’s and down’s. You just really have to learn to role with the punches. Somedays, like the day we got Lily’s chest tube out, are amazing from the moment you walk in the hospital doors. Others, like today, start optimistic and then drop pretty quickly and can feel incredibly overwhelming. But if you can focus on getting through that day’s adventure, then you’re still going to come out feeling like you’ve accomplished something (and by you, I totally mean Lily, but since she’s still totally out of it, we’re proud on her behalf).
We also realized today (and have been realizing all along) that we’re incredibly lucky right now. Yes, with the diagnosis of the Pulmonary Vein Stenosis (PVS from now on) we’re in this game of “wait and grow” to determine what role this is going to play in Lily’s life and there is certainly a grim outlook on it when you actually search the term on Google, but for right now: this surgery, this recovery, we’re so very lucky. While Lily does things on her own time, we can still see some sort of progress every single day, and all around us there are kids and babies and teeny tiny babies, who aren’t so lucky and are struggling with things so much bigger than what Lily was going through: tiny babies having heart transplants, tiny babies being admitted because they’ve just been born and their mom’s are too sick to come with them; father’s who are torn between where to spend their time – it can really be a heartbreaking place to be. At least once a day you will walk down the hallway and run into a mom who is just sobbing like her heart is completely broken and you realize, sadly, that it probably is. So for tonight, we’re just so so so thankful that even though it’s not always an easy journey, we’re so lucky that it’s the one we’re on. Tonight, I’m thinking about Grayson and Baby Boy Green.