This weekend started out great for Jasiu, he got some new medicines, it made hm pee and lose all that extra fluid, but his restriction was raised a little bit to 1,100 mls to compensate, but the first day with the increase in meds Jasiu was 700 negative !!! That is A LOT for a little 2 year old. Saturday and Today he is fairly neutral and his x-rays look excellent. Saturday he drained only 10mls from the chest tube and today was very minimal as well, I'm sure it's less than 10 but we have to wait till 7am to know for sure. According to Dr. H they may pull it out tomorrow (Monday). Labs looked good except for potassium was low, but with such heavy diuretics that was expected. Today when I came to see my boys in the morning, I met Jasiu the prune. His eyes look really sunken in, to the point where when he's sleeping the top and bottom barely meet and probably because of this drying out and the meds he did not eat any ting all day, only fluids. As a result we have a very weak boy who is not even in the mood for playing, his ciupagi, or hanging out with his sister in the playroom.
I feel so bad for him, as he can't seem to catch a brake. When his lungs were full of fluid and draining like crazy he was awful on the inside but in a great mood and playing like nothing ever happened on the outside. Now he's dry as the Sahara but his mood is awful and he looks so sad. He looks like he lost about 5 pounds since the surgery, may not seem like a lot but on a 2 year old you can tell.
So if they pull the tubes tomorrow than we should stay for another 2 days for monitoring and switching all diuretics to oral, just to make sure he can tolerate them and that they are as effective at the doses that they are via iv. After that we continue to monitor his intake of fluid, his behavior and how he looks on the outside, as it is a pretty good indicator on how he is on the inside. We continue the FF diet and will have very frequent x-rays post discharge given his current history.
Thank you for all the prayers and please keep them coming, especially for fluid not to return and for appetite and mood to improve. It is so heart braking to see him this way and I feel that it's rubbing off on my mood as well and I'm starting not to like the person I'm seeing in me. I wish I could speed things along and am impatient and anxious, which turns into negative behavior in general. I hate feeling when I think I'm going crazy :(
Also, this was our first "holiday" that we spent in the hospital and I'm not going to sugar coat it, it sucked, big time BUT I still do have my children, they were able to be together in one place at least for a little while and even though I lost my temper once, I still love them and my kids are the best thing that ever happened to us. Emotions were just flying like a tornado everywhere. I can't wait to be home.