An official diagnosis... (edited)

Veno-Occlusive Disease.  I don't recommend googling it; it is scary.  It is a disease that is more common in patients who have had a bone marrow transplant; it is a graft vs. host kind of thing.  It is extremely rare in kids who have not had a transplant, but it can be caused by one of the chemotherapy drugs he is taking.  Basically, the small blood vessels in his liver are all clotted up, so it can't do its job of filtering his blood.  As a result, his abdomen is filled with fluid.  He has "gained" about 5kg of fluid since Sunday.  His chest and belly are all swollen and hard.  This fluid is putting a lot of pressure on his lungs and they are starting to get a bit of fluid in them as well, so it is difficult for him to breathe.  He is not able to lie flat, he needs to be almost upright to be able to breathe, but then his oxygen saturation goes down so now he is also on Oxygen. 
VOD also just eats up platelets, I guess in all the clotting, so that is the reason he has now had 6 transfusions since last Tuesday.  With all that Benedryl, he is just wiped out and he can't keep his eyes open for more than a few minutes.  He is trying so hard to watch the hockey game, but he just can't stay awake!
His most annoying issue right now is the fluid- it is causing most of the problems- so they need to get him to pee it out. 
What he is on right now: (I am not sure of the spelling of a couple of them)
Ondansetron - the anti-nausea drug, often given to him orally, because every time he has to stand up, sit up straight, etc, he vomits.  He is now getting this IV; they are hoping to stop this nausea, because he hasn't eaten a thing since Saturday night and they want to insert an NG feeding tube. 
Gravol and Nabilone - two more anti-nausea meds
Piptazo - antibiotics, because he had a fever yesterday
Morphine because his skin hurts from being all stretched out and his tummy is just uncomfortable.
Lasiks and spironolactone - two different diuretics: he needs to pee out all the fluid in his belly right now. 
Ursodiol - a drug used to treat VOD don't know exactly what it does, but it works with the defibratide.
Defibratide - now this is the one that is interesting and where God really showed up- This drug is only made in Italy, it is very expensive and not only do you need special permission from a doctor to prescribe it, our doctor had to spend all day on the phone getting permission from the Government to give it to him.  She got the permission (thank you Lord) and the hospital "happened" to have a secret stash from the last patient to have VOD here! It is very hard to get and sometimes it takes a couple of days to get here, but not today- he is actually getting some right now, and will be getting it every six hours for the next 48!  The nurses are amazed.  I'm not really surprised, jusst really thankful - I know who orchestrated all of that : )

The Defibratide can cause bleeding, so they need to make sure his platelets are always around 50, so they gave him some good platelets today and will probably do it again tomorrow. 

They are also worried because he isn't peeing as much as they would like, so we now have a nephrologist on the team of doctors that comes and goes.  One of them explained that Noah's kidneys can sense that his blood pressure is not quite right and when that happens, they can just kinda go to sleep and quit working and it is hard to wake them up again and then you have a problem of how to get all that fluid out!  The Nephrologist is ok with the drugs he is on now and will check in again tomorrow. 

They also moved us up to 3B, where they can keep a closer eye on him, and we now have our own nurse.  The nurses often have two or three patients, but I guess they decided that Noah warranted his own nurse. Actually today he had two - there was a nurse from the Nursing Resource Team shadowing her so he could learn how to be a nurse in Oncology. 
They (I keep saying "they" because I am not exactly sure who is making all of these decisions, lol) are fairly confident that by the time Tom gets here on Thursday morning, he will have turned the corner.  They are really on top of this and I am very thankful for the care that he is receiving. 

We also had a really nice visit with a friend, Alice Tromp, from Smithers today, thanks for coming Alice!
Please pray that the drugs that are working in his liver do exactly what they are supposed to do, and that his kidneys will be protected.  Even as I write this I am reminded of Julie Monn - Djasngar's comment on yesterday's post (that made me bawl my head off, by the way...), that more detail doesn't matter - God already knows what Noah needs, we just need to trust that he will do what needs to be done. I am thankful that we can see His Hand so clearly in everything that happened today.  Please keep Tom and the girls in your prayers, too; I still think it is much harder to be far away than to be here where the action is!