I held him..

I am going to start this blog with good news. Dr. Maim, who we met when we first arrived, let me hold Liam today, tubes and all. It was a major deal to move him with several doctors there but I held my baby..he was still lying on a foam mattress, so I really held that, but I could kiss his head and talk to him. First time in 4 days. Still feel the weight in my arms an hour later.

Well, the bad news is we still aren't sure what is causing the set back and fluid build up and they think its one of two things. They plan to do another procedure on Monday that will be about 4 hours long, to measure his heart and lung pressures and to truly see how his heart is operating post surgery. It will be catheters through his legs that will take long wires up to his heart and be inserted. Wow science. Basically, when they finished his surgery last week, they left a residual VSD (hole)less than 2mm at the repair patch, which the majority of babies tolerate very well. They typically just close on their own as babies grow but with Liam's set backs, it may need to be fixed if it is showing that this is the issue which is then pushing fluid out into the chest cavity because the right atrium's pressure is too high. There is a chance that he just isn't tolerating it and causing all of this fluid build up in his lungs. If they see this is the cause, they may be able to also fix the repair during this procedure by putting a tiny balloon through the catheter. If they can't do it this way, it will mean another open heart surgery. We are praying for it to be fixed in the catheter procedure so we do not have to traumatize him any further. And his incision has actually healed already, one scar is enough.

In the meantime, he has two chest tubes in now and it is draining a lot of fluid. The left side is a little under 800 ml and the right side is catching up, since it was only put in yesterday morning. He is so tiny, so to think of all that fluid, its unbelievable. They confirmed the fluid coming out is something called chyle, which is lymphatic fluid. Typically, cancer patients have this and cardiac surgery patients. However, his type of repair was not one that would have injured the lymph nodes and the repair was not near the duct that carries chyle so this is really why they are doing the procedure. The team here is unsure of why he would have this fluid, so while they are in there, they will also check the duct that carries it. If it ends up being the duct, this is a long process to treat. We start with his feedings (chyle is the fat fluid your gut makes so food effects the amount of fluid he has). They already started him on prescription formula and once the tubes finish draining, he needs to remain on this for 30 days and then start weaning off it. If the formula doesn't work, there are some medicines but the results are not great, 1 out of 15 it has worked in. The best treatment really is another surgery, similar to a vasectomy, they basically clip that duct off because we don't need the chyle. This is hard to explain so I'm sorry for the confusion. I have a picture the doctor drew but we are limited in scanning!

We hope its one of these two issues because we simply are just waiting for a treatment plan and in the meantime, he is sedated, with tubes coming out of him, and its plain scary. He is stable and that's the best thing but it looks like with either outcome, we will be in ICU for some time. Chyle is very hard to treat and can take weeks to months of treatments if its not repairing of the heart..again. This is heartbreaking for us so we are hoping he does respond well to the plans that come out of Monday's procedure. We will update the blog probably late Monday or on Tuesday, they won't put him under to late afternoon\early evening. We know so many people are praying, please keep my baby in your thoughts. While I am dreading that this might mean several months in the hospital, I just want to take him home healthy.