Today we all went to see Mr. Bug after church. I took Sunshine in with me while everyone else waited, and she was very happy to see her brother. On the way in she kept asking if we were going to take Mr. Bug home with us today, and I don’t think she really understood that he is still sick until she saw him. Then she said, “Oh, our baby didn’t wake up yet!” She is the only one of the three kid-os who really wants to snuggle up to him. The others want to play and eat the cool snacks we have in his room, but Sunshine wants to hold his hand and talk to him. She told him all about what she had for breakfast and what she did at church. She is downright chatty, and he listens patiently, just like he always has. Although now he has no choice. I’d like to believe he really is hearing her and that it makes his soul happy to hear her chatter at him.
We sometimes feel a little out of the loop on weekends as we try to have a Sabbath from the hospital on Saturdays. When I saw him on Friday, they had decreased the vent settings a little, and he was not happy with it. Today, they put him on a type of vent setting where should he want to breath by himself, he can. With this end in mind, they are also taking him off the paralyzing agent he has been on for the past 2 1/2 weeks, and hoping that within a few days, he’ll be breathing on his own! This is what they call “aggressive treatment.” I don’t know if they believe it will work. However, so far so good. He is very stable, he has not needed blood pressure medication to keep his heart happy, and his oxygen and carbon dioxide levels look really good.
A second possible change is that the cheery infectious disease doctors want to eliminate one of his antifungals to hopefully kick-start his kidneys. The drugs appear to be the cause of his kidney failure, so stopping the drugs should theoretically allow his kidneys to work again. Theoretically. Depending on whether they are actually damaged, they should come back strong. Like the vent settings, this is considered to be extremely aggressive treatment, a last ditch effort.
However, a third issue is that Mr. Bug’s lungs have become somewhat infested with bacteria through all of this. This is to be expected as wherever plastic enters the body, there is a nice little portal for bugs to get in. The infectious disease doctors are thrilled to keep abreast of his new infections, and to treat them accordingly, but these new little bacteria are NOT helping him at all!
Finally, his white blood cell count continues to decline. Bad news there. He NEEDS those white blood cells to fight this thing! All of these systems are interconnected, and the hope is that if his kidneys work again, they will let his bone marrow know that it needs to pull it’s weight a little and make a few white blood cells!
So Mr. Bug is now entering the realm of “make it or break it.” If he can handle all of this treatment, he’ll be good to go. That’s where the 5% of hope comes in. It is possible for him to work with the doctors and pull through this, and this is the time for him to show his stuff! If he cannot handle this aggressive treatment, there is the problem of putting him back on the life support knowing that while he can be sustained indefinitely, the damage is irreversible, and at some point they will have to make decisions about taking him back off the life support. So they can either call this their last effort and if it does not work, let him die a “natural” death, or they can put him back on life support and hope that somehow he starts to heal sometime in the future. This is a chance the doctors appear unwilling to take as it is one thing to let nature take it’s course, and it is another thing to intervene when there is no healing possible and THEN remove care when a person is not anywhere near clinically dead, or even brain damaged. This is an enormous ethical dilemma, one for the text books, or at least for my ethics class next semester!
I predict that this is going to be a very interesting week! If nothing else, this is a very critical time in his care. With this in mind, please, please, please don’t stop praying for him! The major issues continue to the same: Lungs, kidneys, white blood cells!!! Pass Mr. Bug’s story on to anyone you know. We need to world to know that their prayers are desperately needed for this little one’s complete healing soon!
Thank you all who have been praying for Mr. Bug. He is such a special little one and has brought so much joy to everyone who has cared for him in his life. Thank you also those of you who have offered and given help during this time. You can’t imagine how much all you have done has helped us.
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