I'm not quite sure where I left off with the Gaines report. I haven't posted in a few days. Between hospital visits and life, its not always easy to get on here and post. The good news is that I had a really productive weekend and got to spend a lot of good time with Gaines.
Ok...let see. Late last week Gaines was on 5 liters and somewhere between 60-80%. I visited early Saturday morning and he was back to around 60% so I was happy. Later that morning the doctor called me to tell me that he wanted to wean Gaines down to 4 liters. Of course I was on board. He had no problem weaning down and seemed to have a good weekend on 4 liters and 60-65%.
Overnight he crept up to around 70% and this morning the doctor decided to put him back at 5 liters. I'm not exactly sure why because Sunday he seemed happy with his progress. His nurse says its because his sats were hanging in the low 80s and the doctor didn't want to go too high on the oxygen. They also did an x-ray (they do one about every other day here) and it showed that his lungs looked pretty cloudy. The doctor thought it could be one of several things.
One thing he was concerned about was possible pneumonia so they did some blood work which, sigh of relief, came back fine for now. The other thing he thought was that it could be fluid so he's getting two extra doses of lasix. He's had some crazy weight gain patterns lately so that doesn't surprise me. Hopefully the lasix will help him breath a little easier. He's also getting some blood today (which I have mixed emotions about) but maybe it will help. I've just been under the impression that he shouldn't be getting blood now because it sort of tells your bone marrow to quit producing red blood cells...which we don't want. I'm sure the folks with medical degrees know a little more than me...I was just surprised that they wanted to do that.
So, I guess the bottom line is that today wasn't Gaines' best day but with the lasix and new blood, tomorrow should be much better. Please keep him in your prayers. If Gaines got pneumonia it could be really bad for him.
Everything else is going really well for us. We are still really thankful to be home and are settling into a new routine. I feel like we go non-stop but I'm getting used to it. It hit me tonight that Reed is fairly close to turning two so I'm mulling over birthday party ideas in my head. The last few months have gone by painfully slow yet they've flown by. Weird concept I know.
I guess that's about it for tonight. Please really keep Gaines in your prayers. He's not quite out of the woods just yet. Right now he's fine and we are just trying to figure out how to get him home but the doctor reminds me that he is still at risk of developing things (pneumonia, pulmonary hypertension) that could be really bad. Also, keep praying for his little lungs to improve.
Love to all,