I am incredibly sad to say that Noah's supra-pubic site has been looking progressively worse all day despite all that was done in the O.R. yesterday to help it improve. He has also spiked a fever today and his central line site is looking worse - he's had redness and drainage there for several days but is now developing pus-filled blisters on the skin around the line.
We will be leaving very early in the morning tomorrow to go to Greenville so our urologist can take a look at the supra-pubic site. To be honest, I am dreading this appointment. If the site is as bad as Dr. B and our nurse think it is, we will be left without any good options. Jeff is unable to come and while I can certainly call him, this is not an appointment I relish facing alone.
While we are meeting with the urologist, Dr. B will be back here in Greenwood speaking to the infectious disease doctor (who is in Greenville in the same building as the urologist) and with Noah's central line surgeon (who is in a different hospital in a different city.) The juggling act is that the supra-pubic NEEDS attention, the central line NEEDS attention, and Noah has a sleep study tomorrow night in Greenville that NEEDS to get done and not be delayed. Somehow we need to transcend time and space tomorrow (Dr. B said we need a "Beam me up, Scotty" device like the one on Star Trek), but since that's not likely to happen we are hoping that the infectious disease doctor can do some labs and/or offer some guidance on these infections after we see urology and that we can somehow buy enough time to get the sleep study done before getting Noah to Columbia to see the central line surgeon.
It is almost certain that Noah will need some kind of bladder surgery sooner rather than later, and it's possible his central line will also need to be replaced. Because both of these are related to infections, it's not like we can put either one off for a week or two while we catch our breath. Until the smoke clears tomorrow, we won't really know what all needs to be done and where it will be done and in what order it needs to be done. As it stands at this moment we'll see urology bright and early then spend the day at the Ronald McDonald house until it's time for Noah's sleep study tomorrow night, but when Dr. B was here tonight he said we need to keep in mind that it's possible Noah will end up admitted by urology right on the spot tomorrow.
I'd like to say I'll be going to sleep early tonight so I'm ready to face our early and difficult day tomorrow, but Dr. B spoke to the on-call infectious disease specialist tonight while he was at our house and they feel that we need to change the antibiotic we are using. Our amazing infusion pharmacy sent in a pharmacist to mix up the new antibiotics and will be sending them by courier tonight so I have them to start first thing in the morning and to take with me to get through tomorrow and Friday. It will probably be about 1:00 AM when the courier gets here. Even though I'm tired, I'm focusing on the fact that we are SO blessed by an incredible pediatrician who not only spent a lot of time here tonight sorting through antibiotic choices, consulting with specialists and pharmacists, but also found time to watch some silly Angry Birds videos with Noah and even brought him a new Angry Birds book to enjoy. We are also so blessed by and thankful for our infusion pharmacy who is willing to do all of this in the middle of the night so we have everything we need by the time we leave tomorrow, and by our hospice team who is showing up very early tomorrow to change the cartridge on Noah's pain pump so he doesn't run out of pain meds while we are gone. Noah's medical team is truly beyond compare and I can't imagine what life would be like without them.
I'll try to update tomorrow as I can or get Hannah to update for me.
Blessings,
Kate
