Aloha!

Halleluyah i thought this day would never come. Conner has been fever free for 29 hours and his rash has gotten much better. So looks like either tomorrow or Thursday we are going home, YA NO MORE HOSPITAL! (well for awhile anyway!) And since the fever went away after they stopped the IV Zosyn, we are assuming that was the culprit. Doc says that can happen at anytime, even a drug you use frequently. I shouldn't say with any drug, with specific drugs, like zosyn it's in the pipercillin family which i guess is famous for these drug fevers. So no more zosyn or any of it's cousin meds either! ;)
We've got Conner's make a wish trip scheduled for Saturday thru thursday then daddy will have the rest of the weekend to be home with us, for some much needed family time!
I am well aware that Conner is not at 100% for this trip. We are taking along our FAA approved oxygen concentrater with lots of spare batteries fully charged, and if you've been following me a bit, or have known us awhile you'll know that we do realize that Conner may be readdmitted soon after his wish trip. It seems anymore he can't make it past 4 or 5 days w/o iv's before he gets another infection, which is so frustrating.
I've learned to respect CF greatly. I've also learned that having mrsa and pa is really not a good combination. it can make your body weak and with no reserves to battle lung infections because your body is constantly fighting anyway. But I also learned that i am hopeful. And hopefully optimistic. This time about a week ago, or maybe the week prior who knows anymore, I was feeling pretty beaten down and even "raised my white flag in defeat" but no more. I've learned that those feelings will come and go, you can't be 100% positive, 100% of the time. Just as long as you realize that you can't stay in that negative, frustrated space for too long! So game on CF, it's GO TIME! I had my moment of doubt, but no longer. Meet the new and improved Sarah, and get ready to be TAKEN DOWN! (oh and by the way, PA and your bff MRSA, you're up next!)

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!!!