Just finished speaking with Dr. B. Noah's urine grew out one of his usual culprits. It's fairly clear at this point that the gentomycin (antibiotic) bladder washes are no longer holding infections at bay. We're going to continue them for the meantime while Dr. B talks to urology and infectious disease, after which point we might just try vinegar bladder washes.
Noah is still looking fairly rough. He can have a very, very short burst of concentrated energy but within a few minutes all of the color literally drains from his face and he is totally worn out. As long as he is basically resting (using his ipad, playing quietly with Lego,s etc. he seems pretty good but even then he is very pale with dark, dark circles under his very sunken eyes.
We need to find a way out of this. We had such a great summer with no infections, and I'll always be thankful that the gentomycin worked at least that long. . . . I just expected it to last a lot longer. While the 2 bugs he keeps growing are susceptible to the antibiotics he's taking (at least they are in a lab setting!), they are not being eradicated by them in Noah's body, so they rear their ugly heads again almost as soon as the antibiotics are stopped. Dr. B will be revisiting the idea of continuous antibiotics when he speaks to the infectious disease doctor next week. This would come at a great price to Noah - IF it worked, it would hold the bacteria at bay longer but it would also probably hasten the development of a totally resistant bug and therefore potentially hasten the end of Noah's life. It's an agonizing quality/quantity debate and it may not be something that we can even do anyway.
We will be repeating all of his labs right away on Monday and will plan to go to Greenville Tuesday for a transfusion if needed. If Noah is doing all right, I'll be going to Greenville Monday for a greatly-needed once a month "big shopping." I dislike the idea of going two days in a row but there is no way I would drag Noah around to stores the way he is feeling right now.
Saturday, September 8, 2012
Pray for Noah
I'm going to cut and paste Noah's mom's Facebook update here for those who are not friends with her there. Please keep them in your prayers.