Pseudomonas

I missed a call this morning around 9:00, didn't hear the phone ring in my back pocket because that is the time my students are arriving, playing, and I am talking with parents as they drop off.  When we took the kids to P.E., I ducked out to listen to my voicemail.  It was Dr. Thompson, Monkey's favorite Pulmonologist from the CF Clinic.  He said he wanted to talk to me about Monkey's throat culture results, that it wasn't urgent and I shouldn't worry, and that he was in Clinic until 4:00, so would not be able to get back to me for awhile.  I shouldn't worry?  They do a throat culture every time we go to clinic (except the time he puked on me), and never call unless he is growing something.  On top of that, the doctor has NEVER called himself, it is always a nurse!  So of course I knew something was really not good, and I had all day to freak out and worry about it.

When he finally called back around 4:30 he told me Monkey is growing Pseudomonas.  I'm still fairly new to all this CF stuff, and since Monkey has been mostly healthy so far, I don't know about all the bugs our kiddos get, but I know enough to know Pseudomonas is the one you don't want your kid to have.  He went on to say that he has 3 different strands, they are all rare (of course, because everything about my Monkey is rare), and one is mucoidal.  The fact that it is mucoidal means it is likely to colonize.

Ok, deep breath Jodi, keep listening and stay focused.  Take in all the information.  Keep breathing!

He goes on to explain how they will treat it (2 weeks of oral antibiotics and a month of Tobi, an inhaled antibiotic).  If it colonizes, he will be on and off the Tobi every month to keep it at bay.  He tries to be reassuring.  Tells me some kids with Pseudomonas do just fine, while others who don't have it do poorly. It doesn't define anything, blah blah blah.

Monkey will have to start going to a different clinic, so he doesn't pass this horrible bug to other sweet babies with healthier lungs.  Monkey, up until now, was still in the newborn clinic because he was not growing anything dangerous.  Because kids with CF can easily catch these bugs from each other, they put them in clinic based on the bugs they have so they aren't sharing space with kids who can pass them a new bug they didn't already have.  He will now be going to the Tue./Thu. clinic with all the kids who have this ugly bug.  And he won't be seeing his beloved Dr. Thompson anymore.  That about broke my heart to hear!   

When I got home, I sent a message to a friend of mine who has a twelve year old son with CF.  They have  been through about everything, and she is very knowledgeable. I turn to her when facing something new with Monkey because I know she will tell me like it really is, from the perspective of a mommy, not a doctor, which is what I really need at these moments.  She is also amazing at explaining the medical stuff in a way that makes sense to me, so I really understand what is happening in Monkey's little body.

She said colonized mucoidal Pseudomonas is like a pilot light waiting to flare up.  It stays dormant, then when you get another bug, such as staph, it flares up.  Every time it flares up it causes more damage to the lung.  She says where she lives, every time a kid gets Pseudomonas, they are admitted for IV antibiotics.  Her son had mucoidal Pseudomonas before and they were able to eradicate it.     

So, with this information, I am now prepared to be my child's advocate and call tomorrow to find out how much is growing, and why they don't think it should be treated with IV antibiotics.  In the meantime, I will prepare to do whatever is best to keep my baby's lungs as healthy as possible until that cure comes along.       

Planning

I haven't written in awhile because I haven't had much to write about, which is pretty good in our world.  That means Monkey has been mostly healthy, and life has been fairly normal. 

I have recently started to really dig into the planning of my fundraiser.  I have the location, date, and time set.  If you are going to be in Columbus April 12, you should plan to attend our event at 4:00 at Alumni Club Sportsbar.  I have also started to solicit items for auction and am so excited by the responses I have gotten so far.

I decided to email PR/ Community relations people for our local sports teams yesterday.  I looked up each team and found the person who I thought would handle the decision to make a donation.  I'm so excited by the response I got from the Columbus Crew, our Major League Soccer team.   First thing this morning I received an email from him stating that he had a cousin who had CF, and he was thrilled to send us some items for auction.  I guess karma, or the universe, or whoever/whatever force is out there, guided me to choose the right person to send that email to.  I can't wait to see what he sends. 

I have also received some generous offers from family and friends and will be hitting up some local businesses this weekend.  Since this is my first time doing this, I was a little nervous, but everything seems to be falling into place.