Wednesday, September 23, 2009

And the rollercoaster continues

Well...we definitely got news a little while ago that was not welcome. One of the swabs that was done during surgery and cultured came back positive for the presence of staph. The level is in the "rare" category, which is the least severe. It's not classified as an infection quite yet, she's not showing any symptoms or running fever. I called Dr. Chugani at home in a panic (God bless that man for giving me his home number!) and he helped to calm me down...he felt it was too soon after surgery for the culture to be showing any sign of staph and that it could be a contaminant from the surgery itself, something from the skin for example. He said if she had an infection she would be showing signs, i.e. fever, heart rate, etc. So far she is not.

They started her on an IV course of Vancomycin and for now plan on sending her home with a PIC line and a 4 week course of IV antibiotics. I asked Dr. Chugani how we would know if it was a real issue or not and he said when they determine what type of staph it is they would know. He said they haven't had an infection in years and years and it would surprise him if this is one. I hope he is right. For now we are scared to death and for once I think Michael is holding it together better than I am. (Love you M.)

I of course immediately turned to Google and found several stories of something like this happening after epilepsy surgery and while it was an ordeal in and of itself it didn't have any lasting implications. What makes this a little hard right now is she is still so out of it from surgery that we can't rely on behavior as an indicator that all is well.

Again...prayers, good vibes, all of it is needed and appreciated.

8 comments:

baby trevor's mommy said...

Not that this is any level of the same...buuuut...

During Trevy's first round of ACTH he had a really intense fever that sent us to the ER on Christmas day. The cultured him...and it came back positive for staff. I freaked out...and we did intravenous antiboitics...came back the next day to re-do the test. It came back negetive. In the end it was determined that he had a raging ear infection...and the first positive was a false/positive contamination.

I hope that's true for Julia too!

I know the waiting...and her being unable to communicate make it super hard on the heart though.

Hang in there...

...danielle

Lenora said...

Lisa & Michael - I have just read your entire blog - Wow! You guys are the best parents. Julia's picture is still on our altar and we will be sure to pray for her everyday (and during the day). I particularly pray that the staph infection is not serious and that she heals quickly. I know all of us want to see our Julia up and "running" around soon.

Much love to each of you. We are also keeping up with Helen who has done a wonderful job keeping us all informed and with Gigi & Ed.

Anita said...

Sending good vibes your way and praying that it is just a false alarm.

Anita

Helen said...

Glad you received assurance from Dr. Chugani. We are praying for a negative result. Give Julia our love. Hang in there ... The roller coaster will slow down soon ... maybe enough that you guys can jump off.

kylekenzie said...

You are in our constant thoughts and prayers. We said an extra night time prayer just for Julia tonight. Love you guys

Mel

Sophie's Story by Elaine said...

A rollercoaster it is. I am hoping that Dr. Chugani is right and that this turns out to be nothing.

JSmith5780 said...

If Chugsni says don't worry I would take that as a positive sign. Hope today is a good day!

misslauren0707 said...

Thinking of you guys and hoping its nothing.... XX

Lauren B