I have been getting a lot of emails from people asking about Bella. Thank You! You have no idea what those emails- full of your thoughts, prayers and concerns- mean to Marc and I. I have wanted to wait until I actually had something to report. Bella's fevers are coming closer and closer together and they are harder and harder to fight off. She has had three fevers in the last three weeks- all of which have gone above 106 degrees! It is misery for Bella and so hard on us watching her go through this. Not to mention, Marc and I are growing more and more concerned about the effects that the
prednisone will have on Bella in the long term. As I have mentioned previously, the
rheumotoligist that diagnosed Bella with
PFAPA has relocated to Israel. We felt as though this put up a road block for us as far as getting more in-depth into her condition. The
rheumotologist had told us previously that in all of the case studies that they have done,
tonsillectomy was successful in eliminating future fever attacks (although they don't know exactly why) in a large percentage of patients.
At our last appointment with our pediatrician we had discussed how Bella's fevers were getting worse and coming closer together. We had expressed our concern over Bella taking more
prednisone than we were comfortable with, being that she is having the fever attacks more frequently. The pediatrician shared our concern. When I brought up the idea of the
tonsillectomy he said "So let's do it!" I informed him that we were told
no doctor would do the surgery until Bella was at least four. He told us he would call Bella's
Otolaryngologist and discuss the matter and see what they could work out. Late one evening the pediatrician called me and told me to call Bella's
Otolaryngologist (
ENT) and set up an appointment. Oh! I was excited but I didn't want to get my hopes up.
Well, today we had our appointment with Bella's
ENT and it went very well! He was very knowledgeable about
PFAPA and knew what the success rate was for patients with
PFAPA that have undergone
tonsillectomy. Although it was a little discouraging to hear that the success rate is actually only 60-64%, Marc and I are still very hopeful! We had discussed with him the issue that Bella has with her left ear
oozing gross stuff right before her fever peaks. He knew exactly what we meant so he will be removing her
adenoids as well. The left ear is the ear that Bella only has 40% hearing in, so he is going to take a very good look when she is under anesthesia and if there is something he is able to correct, he will take care of that at the same time. The goal is to "fix" everything he can at once so as to not have to put her through any more surgeries than we have to. We want to make this as least
traumatic for her as possible. She has been through so much in her short three years as it is.
The scheduler will be calling me to set up a day and time for Bella's surgery. I do not know yet exactly when it will be but I know it will be soon. They will be keeping her at the hospital after the surgery, at least one night, for observation- which makes me feel better. Just like with any surgery there are risks involved. And we do not have a 100% guarantee that this is going to "cure" Bella. Marc and I have weighed the "risks verses benefits". We are at the end of our rope. We want resolve for Bella so that she does not have to suffer through these attacks any longer. We do not want to keep her on this
prednisone- not knowing how it could effect her. We want her to have a normal, happy, carefree childhood.
Marc and I are faithful that this is going to work for our little girl. We are praying that God lays His healing hands on her and guides the doctor's hands the day of her surgery. We pray that this surgery is a success and that Bella will fall into that 60%!!!! Surgery of any kind scares the daylights out of me but I am trusting in the Lord with all that I have and placing Bella in His care.
I will keep you all posted!!!
Blessings,
Heather:)
Kyle and Bella took off in opposite directions, as always.
While Cali just wasn't sure what to think of it all.
Most of the pumpkins were only $1.00 but she had some more expensive as well. A sweet woman that taught us the names of all the types of pumpkins she had.
A perfect little detour on our detour.
Life happens. 
