An update for you

Hi there everyone...mum here again
I wont beat around the bush...eli has been extremely ill, and continues to be so-so.
Eli ended up with an extremely virulent gram negative bug (grew in 4 hours)...which sent his body into a pretty full on toxic shock. His pulse was high at between 180-200 for nearly 13 hours, and a dangerously low blood pressure. To raise his bp, they pumped his body with fluid which worked for a short time, but he dropped again. In the emergency dept we were shifted from the security of the isolation room to resussitation - just in case. Unfortunately, he wasnt losing the excess fluid which was causing more things to happen internally. They gave him some stuff to bring his bp up and we were shifted to ICU.
The following morning we moved to the cancer ward where eli continued to be on and off and slept HEAPS...almost 20 hours a day. Eli's pulse dropped nicely on friday, and his bp raised to a good level, but needed oxygen occassionally to help him be comfortable.
Unfortunately on friday night, eli's oxgen level plummeted very quickly and the hospitals "MET" team were called. Eli was unresponsive, but fortunately came back around with the use of oxygen on full bore...we instantly had a squillion people in the room, and a very upset mum and dad. Not very nice at all.
In saying that...its absolutely amazing the quick response time for eli. Awesome really.
Eli was prescribed some medicine to make him wee to try and get the fluid out of him. Meanwhile a rash was developing rapidly. There were 2 trains of thought...because his little body was septic, it was thought to be a septic/toxic rash, or the possibility of graft vs host disease. Eli also developed the runs.
Sat/Sun were very difficult days, with lots of experiences with his oxygen dropping at the drop of a hat. Not an easy place to hang out in your bikinis on a banana lounge!
Unfortunately his pulse has kept declining as well...so instead of being between 100-140, we are now sitting at around 70-100, very low for a little tacker. Today we had a couple of heart specialists up to see what was going on. Still no answers, as all the main tests have come back clear, which is kinda cool, but is frustrating because we still dont know whats causing the dips.
The main thought now is that they pretty much have the infection licked, but perhaps the toxicity is still in his little body causing his bits to drop out every now and then. Also, Eli had a biopsy on his rash yesterday (yes, chicks still dig scars!) and we will hopefully know tomorrow whether his rash is caused by graft vs host disease. Its kinda ok if it is, because the drs like to see a bit of the disease...just not too much that it will effect everything else.
So, we just wait and see what tomorrow brings...im not going to lie...its has been extremely difficult and gobsmackingly scary at times. Thats just the way it is.
Lots to take in and we know that he still has a very long way to go, and were well aware that the whole experience is and will continue to be a massively rocky road. Whiles it very difficult at this stage not to think about the what if's...it still happens.
We are basically on edge 24/7 not knowing when the next drop will come, and hoping we never have the MET experience we had. They really are not pretty.

Eli in himself has picked up a wee bit...he is eating very small amounts of food, and still taking lots of boobs which is good. He had a tricky day today...nothing could satisfy him, but we take comfort in the fact that he is STILL watching the wiggles when he is not too tired, and that he can sit up and play with his toys, even if its just for a small amount of time. He is still extremely weak.
One of the nurses tonite said "ive just gone through his notes, it really could have gone either way".
We know we are lucky, but i will be honest and say that he is getting tired, but is still fighting with everything he has...
He is affectionately known as the 'budda' cause he is on heaps of steriods to help with the graft vs host disease, and other meds to help get rid of the excess fluid.
All up, we are doing as best as we can. Time and time again we are told we are so strong, and that we are doing an awesome job...but in all honesty, i think that ANYONE in this position would put all their thoughts and feelings aside to save and care for the ones they love...i guess just be there to pick us up when we come home...man, we wont know what to do with ourselves!
anyhoo...best get to bed...long days

thanks to everyone who is texting and sending beautiful messages. I know i say this all the time, but its all you guys that help us to help eli...we have the most amazing and most awesomest mates and family members in the whole wide world.
So from our hearts to yours...thanks a million.
love to you all
mum
xox
and kisses from eli too...the raindancing is doing the trick!