CF may have won this battle, but NOT the WAR!

Well here we are, still sitting at Doernbecher Childrens Hospital in Portland OR....still on IV's... still having 104 fevers...and still NO ANSWERS! Everything comes back clean. Looks like Conner is mystery man these days. He has had these high fevers for 5 days now. It has gotten very old! Conner's sputum came back with pseudomonas and mrsa. and i just KNEW that once they had us end his TOBI nebs that lovely PA would come right back...well so it's taken a few months but yep it's back. I hate this combination. The inhaled Gent that he's on covers both mrsa and PA so we will not be going back to Inhaled vanco i believe. They have not told me yet if we will be restarting TOBI every other month again. I hope not. That would make his treatments so long, don't get me wrong we will do them, we don't skip treatments, but gosh it's so much easier to not have all of these extra neb treatments. At least now he's not in school (i've pulled him out since early October for home tutoring thru the school district to limit his exposure to the h1n1 etc) so we have no specific time we need to get treatments done. But i do have 3 children that need me. They need all of me. We don't get much time away from the hospital or clinic these days so when I'm home I try SO hard to be there for my other 2 boys. I miss them to peices when Conner and I are away at the hospital, and i KNOW they miss me too. Little boys need their mamas!
So Conner's on Zosyn IV, Tobi IV and Zyvox IV and theyre using inhaled Gent to fight the lung bugs too. I sure hope that these start to make a difference soon so we can get outta here.
Speaking of which...we were scheduled to fly out tomorrow for Conner's make a wish. That has been postponed. We are shooting for a departure date of Wednesday. I hope so much we can get there this time. He has to be rid of these fevers. Doc says his lungs sound so much better then they did on admit last week. I'm sure they do because last night he threw up a TON of lovely mucus from his lungs (YA CONNER!)...so the fever is our last hurdle.
Peds pulmonary doc changes tomorrow, but the doc we had this week relays all thats gone on to the oncoming doc...and of course we know all 3 CF docs very well. So Dr Wall will be on board to get us outta here as soon as possible to complete Conners one heart felt wish to go to Hawaii to fly in a helicopter to see the volcanos and lava...and to go on a whale watching trip...
we'll get there i know it.
but dang that CF for once again foiling our plans. We never make plans in advance anymore, because Conner's health is just so fragile anymore, but you have to plan a date for Make a wish of course and look where we wind up. So the lesson in this is...to really live ONE day at a time, and not to worry over tomorrow...for today has ENOUGH worry in itself!!!
I hope to write soon to say that we're going home!!!

104.5 Fevers means No Make a Wish on Monday

Conner has been on Iv's nearly 2 weeks now. He has been in the hospital since Monday. Since Wednesday night he has been spiking fevers ranging from 102.7-104.5 and the docs are stumped. they've run tons of tests. tons of cultures. 2 xrays, cbc's, blood sugars, viral cultures you name it. no answers.
His sputum is still in the preliminary status and it's showing that he's growing a gram negative bacteria....which is quite interesting. Usually MRSA is our dear friend in both the prelim and the final culture. I know my BFF mrsa will be in the final but we're very curious what this new bug he's growing is. I feel it's pseudomonas again. What a horrible combination, PA and MRSA. I hope that I am wrong. Conner's current IV's both cover gram negative bacteria so he's covered, it's now just a wait and see whats actually in there.
His make a wish was scheduled for Monday-Saturday in Hawaii, the big island. Well, unless these fevers break like NOW that won't be happening. I've been in contact with his wish fairy and his contact at MAW and they ensured me that he can get there, they can make it happen with 24 hours notice. So we know we will get there. we just don't know when.

I am beyond flustered.
I am beyond exhausted.

I'm ready for this nightmare to be over with.