This post may be a little technical, but I will explain as I go. - Doc
The day after the chest tubes were removed, Rowan had some fluid build up in his right chest that required a pigtail catheter (smaller tube with a curly end) to drain it. This is not uncommon after a big surgery like his and this tube is much better than the big chest tubes comfort-wise. The fluid did make it harder for him to breathe while it was there but once it was gone things got much better very quickly. His tidal volumes had been decreasing (his lungs weren't able to expand as much) because of the fluid and this improved a lot with drainage. (They got 70 mL off when they did it.) The amount coming from this tube has gone down a lot, so it likely won't be needed much longer. Basically, two big tubes out, one little tube back in, and it will come out soon.
He also had a tube in his belly (PD catheter) after his surgery to drain fluid. This had not been draining much, but it was because it had gotten clogged up. This was the same time he was getting the fluid in his lungs and they unclogged it when they put the little chest tube in. This had not been draining much since then so it was actually removed today. One tube out, no replacement needed for now at least.
One of the main goals is getting him off the ventilator (breathing machine). Today, he is at room air, meaning the air in the machine is the same concentration as what is floating around instead of having more oxygen in it. He is on SIMV, which means he gets help with his breaths when he inhales and it will only breathe for him if he does not breathe enough on his own. He is initiating all his breaths right now, so he is making good progress.
Today will be his first shot at food that doesn't come in an IV. He will get a tiny amount through his NG tube (goes through his nose down into his stomach) and that will get increased slowly as he tolerates it.
We are getting some cabin fever, so we are trying to get away from the hospital a bit more. We got to eat dinner with friends that are now here in St. Louis and that was definitely helpful not to mention actually being fun. Thanks Javi and Jessica!
Our son, Rowan, was born with Congenital Heart Disease and later diagnosed with Cystic Fibrosis. He had 2 open heart surgeries, 5 heart caths, and 2 additional surgeries. Realizing that despite fighting for him, Rowan was never going to get better and that he was hurting, we made the decision to change our fight from a long life, to a beautiful end to it. Hospice was a true gift and a beautiful time for our family. We said goodbye to our son when he was 7 months old.
Oh YAY!!! This IS good news. Rowan, you just keep on keeping on, my little fighter! Mom and Dad, get out and relax a bit, and don't forget to appreciate each other! And remember, you each deal differently... remember to remember and appreciate that. :-) Lots of hugs and positive thoughts for all of you tonight.
ReplyDeleteHappy New Years!
Susan V.
MLH of Tulsa