Harvesting Joy

Jameson had a steady weekend -nice and low key. His belly is still on the rise, full of fluid. It has been expanding for a while now and is actually stretching out his rib cage. The belly fluid is actually the main reason at this point that J is still on a ventilator. It is so full and so big that the fluid can press up and collapse his lungs without the vent pressure. So right now, this is our biggest problem.
His chest xray this morning looked slightly improved and he is doing well on that left side without the chest tube. The site is still leaking and oozing a bit but the hole is almost completely closed now. I'm so glad fluid isn't accumulating there and hope it stays this way. The right chest tube is still draining large amounts of fluid daily. I think his chest tube output has actually increased over the past few days. I'm glad that is is draining well but I keep hoping his body will slow down on making the fluid, meaning the chest tube will have less to drain over time. Sigh.
Balancing his fluids is a daily battle for the Drs. His lungs want to be dry and fluid negative is the goal, but the kidneys like to be wet and do better when he is fluid positive. (Fluid negative means he drains/pees/oozes more out than he gets in through ivs and meds daily. Fluid positive means he gets more in than out). It is a fine line to keep him dry enough without damaging his kidneys. His kidney levels are slightly up today so the bumex(which helps to dry him out) is being dialed down a bit today.
His white blood count was up a bit today, 2.1, which is a good thing. It would be nice to keep seeing that number rise. His triglycerides are also high, which is not good. We will get a GI Specialist in today to see what they can do to lower it. His platelets continue to be low and he is getting platelets once or twice a day. As a result of having such low platelets, he is bruising easily and at risk to bleed so his respiratory treatments (beating on his chest) have been scaled/stopped to limit the risk of bruising/bleeding.
Yesterday our lovely nurse noticed that everytime she gave him one of his sedation meds (atavan, sp?), he always perked up instead of calming down...J likes to be that one in a million kiddo who breaks the rules. That has now been discontinued and replaced with vallium.
Surgery came by early this morning to check on Jameson. We are still on schedule for a field trip to the OR at noon tomorrow. I am so looking forward to seeing his beautiful face without a breathing tube sticking out of his mouth tomorrow. And really looking forward to having J more and more awake once the trach has had time to heal a bit and they can lighten sedation.
My little smiley pie guy is such a trooper! I am super impressed with how strong and brave he is to keep on fighting and healing. And he still manages to look cute as a button and have great hair through it all. I'm not kidding- people comment on how great his hair is all the time. It is almost romance novel length now, too. I adore it. I admit, I am slightly biased -I'm probably the only person who looks at his xrays and thinks about how cute his little ribs are...yes, even his stretched out ribs are adorable. I guess finding cuteness everywhere is one of those mom perks. :)