Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Tuesday, May 3, 2011

Sleep Study Dilema

Yesterday I was awaiting an important phone call from Gillette for Kara's sleep study. I walked out to my car on my break at work, and my phone (that has no service in my office!) picked up a voicemail. I quickly listened, writing down the message on the sticky notes I brought out with me. June 14th, the first available date, is the day they had her scheduled.

I instantly felt defeated. We can't schedule the surgery until she has the sleep study and just on Friday we were back in for both ears being infected and now we are still watching for symptoms from the antibiotic.

I wasn't sure what to do first. I called the scheduler at Gillette back, no answer. Next I called the assistant who transferred me to the Nurse Coordinator. I left a long, detailed message explaining when they could get Kara in for the sleep study, that she has yet another ear infection, and is on more antibiotics. I asked if we could forgo the sleep study and forget about tonsils if that's what the doctor needed or if he would just take the tonsils, since they'll probably have to come out eventually anyway.. I waited not-so-patiently for a call back.

About an two hours later my patience got the best of me. I called the assistant again, re-explaining our situation and she transferred me to the triage nurse. The nurse was kind, I explained my thought process and exactly what I wanted from the doctor. She let me know he was in surgery today so they will talk to him tomorrow afternoon. I thanked her and asked for the assistant once again. We can get in for surgery as soon as May 23rd if he'll let us bypass the sleep study.

Without going into a huge explanation of my thought process on this, I weighed everything out trying to decide what was right. I also looked at the explanation booklet Gillette provides to children having a sleep study done. As soon as I was got through it I was sickened. Kara cries if she has to have a bandaid on! I think that last hospital stay wrecked it all for her with her sore, swollen feet hooked up to the pulse oximeter on one side, the IV in the other. Putting her through something as scary looking as this, even though it's painless breaks my heart!

Brian and I discussed our (lack) of options last night not real sure what the heck we should do, or what the doctor would even let us do. It was a waiting game until today.

No comments:

Post a Comment