It's really hard to put yesterday into words. I've been staring at this blank screen for far too long with no real idea of how to communicate what's going on. I've always tried to be very transparent and honest here, but right now I seem to be pinging between denial and heartache with bursts of Pollyanna-esque optimism. When even I don't understand what is happening or how I feel about it, it's hard to explain to others, so I'm asking for a value-size serving of grace as I stumble through an explanation.
First and foremost, we are home. :-) When everything is said and done, the most important thing is just knowing that Noah is secure and peaceful in his own bed.
We saw the urologist yesterday morning. It was one of the hardest conversations I've ever had with a doctor. I went into the appointment afraid I'd have to make an impossible decision . . . and it turned out that there are no decisions to make. Basically we can do nothing or we can take action that would not actually be possible or we can take action that he would almost certainly not survive. Noah has to have some way of having his bladder drained and there are simply no options whatsoever other than what we are doing. Other children do well with other procedures but each and every possibility known to man is, for one reason or another, either simply impossible or not survivable.
I asked Dr. T what on earth you do when not one single option is feasible. He simply said that there are things that cannot be fixed and this is one of those things.
The results of doing nothing (e.g. just keeping on using the supra-pubic catheter) could run the gamut from difficult to catastrophic. It has been made very clear to me that doing nothing has a very real possibility of, as the doctor put it, "causing Noah's demise," but when the options will almost certainly (again as the doctor put it) "cause Noah to die in pain in the hospital" - well, there is absolutely no choice.
Having said that, Noah is doing OK. He's absolutely not in any sort of imminent danger right now. He's sitting in bed playing with Legos. The site around his supra-pubic was looking a bit better on Thursday but is looking considerably worse right now. He has periods of feeling really yucky and periods where he perks up.
His central line site is also looking rough, but we are holding fire for right now rather than rushing to action. He's on very heavy IV antibiotics which should keep any kind of serious infection at bay so we are waiting until his line surgeon is back in the office next week before going to Columbia. I'm praying that between now and then the antibiotics will just be incredibly effective and the site will start to heal.
We will be doing a bunch of extra labs on Monday to see if there is anything that can be done from an immune system point of view to help these sites heal better. Dr. B is also consulting with a wound care team to see if they have any ideas. It's very reassuring that we have doctors who are willing to look at this problem from a variety of angles rather than throwing in the towel completely. If this issue does spiral out of control we will know beyond a shadow of a doubt that everything possible was done.
Blessings,
Kate
P.S. In re-reading this, I realize that it might not be clear why or how this supra-pubic issue is so serious. Noah's supra-pubic catheter is a fairly large tube surgically inserted into his bladder through his abdomen. We are now dealing with bladder tissue bulging out through the hole and constant infection/drainage/bleeding around the site. This has the potential to cause bladder infections (we are fighting our second one in three weeks). These bladder infections can and do wreak havoc on Noah. The bacteria are becoming more resistant and given time will become fully resistant. The antibiotics are very hard on his liver. The bladder infections can lead to urosepsis (blood infection caused by a bladder infection), kidney infections, etc. The site itself could potentially become seriously infected which could lead to a blood stream infection. I am NOT saying any of these WILL happen but they are all very real and serious possibilities and there really is nothing we can do about it. PLEASE do not tell me about some alternative or folk medicine idea. I don't mean to sound harsh, but you need to understand that we and Noah's team are researching every possibility. Thank you for your understanding!!
P.P.S. I think I've fixed the problem with comments, so you should be able to easily leave them. Most comments are moderated so they may not appear right away.
