Friday, October 5, 2012

A Fungus Among Us, literally

Well, Grey’s procedure went well last week. He got new tubes, cultures, and ear washings. His Picc line has been a pain, but a necessary evil, and definitely less of a pain than his feeding tube that is for sure. I cannot say that Grey has embraced his IV.He would like to think that it is invisible, and when it has to be flushed, or the antibiotic is hooked up, you literally have to tackle him and hold him down. Today was the first picc line dressing change, and that was…. Less than fun.

Grey and his Picc line pictures. I try to tell him it's his airplane... here he is trying to make it fly.

Good news and bad news about the cultures from last week. The bacteria is gone. So staph, and e-coli, gone. Super. But, yes… you guessed it, he has aspergillus in both ears. That of course is a fungus. Being that there is no fda approved antifungal ear drop for people that have holes in their ear drums (tubes), we are left trying to be innovative. I cannot even go into the exhaustive story about how we got to this place, but we will go tomorrow to have some antifungal powder blown into his ear by his ENT NP, and that will last for 3 days. After that, we may end up doing some over the counter lotramin solution. Then it’s back to see ENT, and Inf Disease md next week. We will continue to do the IV antibiotics until we know that the ears are dry, and the fungus is under control. I feel like, for the first time, we have the right team on the case. I am encouraged, because for the first time, I think I have heard Grey jabber, and babble more, and try to make words, and sounds more today and yesterday than he has ever made. There was a cup dropped in the kitchen today on the ceramic tile, and it startled him so much, he cried and covered his ears. I sincerely don’t think he heard much of that stuff before. Again, he heard enough to follow commands etc, but not enough to try to annunciate, and communicate effectively for his age. On the other hand, I feel like this kid is a ticking time bomb… little fungal balls sitting in his middle ear, just waiting to migrate to his central nervous system. Oh, if only I wasn’t a nurse.

Todd and I ended up delaying our Cabo trip until February…. Sigh. That is all I can say about it without being tearful ;)

Lilly and Owen are doing super. Preschool/Daycare is going great for all of them. Owen had a fearful time, and cried during drop-offs; but not anymore. They all wave, and we are on our way. Lilly is our little social butterfly. She likes to see her friends, and rock the baby dolls. Grey likes all the different toys. I think Owen likes to be the observer. He definitely likes the outdoor toys, but is a people watcher for sure!

I think they may potty-train themselves if we don’t get onboard soon. They are currently telling us “pobby” and disrobing, and taking their diaper off, and each time, or darn near each time, they will go to the use the toilet appropriately. Urgh. Seriously, just not geared up for training yet. But, they may leave us in the dust.

Allow me to jump back on my soapbox again. Hoping this will be the last time for a while… or nobody will read… lol.

Sooooo, the Colts coach Chuck Pagano is sick. He has leukemia. Turns out, new diagnosis, and a pretty favorable leukemia if there is such a thing.  The news for the last 3 days has been “showing support” and the players have been at the Simon cancer pavilion, and, they installed the NFL network into his hospital room so he could watch the games.  In fact, they are leaving the light on in his office until he returns. Great. The second story on the news website tonight is about 560 patients that received a medicine that was tampered with, and one person has already come down with fungal meningitis. Over a 20% mortality rate… that would be for just taking a medicine… unknowingly… Look, I hope that Mr. Pagano does well. He seems like a nice man. Seems like a good guy. But not every person that gets the diagnosis of leukemia gets a 2 hour long press conference on every local channel, and the whole city rallying around them, having t-shirts with their names printed on them, fan mail, care packages, and their co-workers (pro athletes) visiting the hospital to brighten the days of the patients. I hope that all of this brings awareness to Leukemia, illness both young and old for those sitting in their Colt’s box office even when it doesn’t affect one of their own; even when it doesn’t get publicity by the local news, or their agent asks them to, or “make a wish” contacts them. Don’t get me wrong, I could care less if I was sick, and a celebrity came to my room to say “Get Well”. Ask Brooke Schaefer. When I am sick, I have a few choice words for anyone that will listen… (Todd may enjoy a celebrity visit though J). AND, when my kids are sick, I am even worse. Ask any St. Vincent Women’s anesthesiologist…. I don’t’ have a good record with them.  But, really. I find all of it annoying. How about a spotlight on a single parent trying to take care of a sick kid, or a spotlight on how most people can’t have their famous boss get them into the cancer center the next day to see the oncologist, and have to wait for a few weeks with anxiety… you get my point. I hope Chuck gets better soon, but not because the Colts will benefit, or it will affect me personally…. But, because he is human, and he puts his pants on one leg at a time just like you and I, and I don’t want to see him nor his family in pain. Maybe, just maybe I know too much about how it worked in transplant at “that” facility, and I know that doctors and executive management teams are just salivating to get those VIPs in asap. Urgh… Good Luck Chuck… But also, good luck to those that are up on the BMT floor fighting for their lives too.

Off my soapbox.

Here are some pics from the last month or so.

                        This is Owen at the Fishers Fall Festival
                          Lilly with her beloved balloon at the festival
            Grey with this war wounds(thanks to Owen), at the festival.

All 3 at Ft. Harrison, we had what Todd calls a "Ladybug picnic". (Sesame Street Reference)

 Rare to capture all 3... they were running... HARD, they slept very well.
                     Lilly and Owen liked the leaves, Grey... not so much.
                     Grey was too busy on the move exploring.

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