Madilyn is scheduled for her next surgery on Tuesday, 9/15 (Donny's birthday). Her surgery time is 9:15, so we will have a nice early morning that day. This surgery will be outpatient and they will be removing the spacer from inside her bone, and cleaning the inside of the bone of any remaining destroyed tissue and/or mass tissue. Hopefully this will be it for surgeries!
We had an appointment with Dr. Shore, the infectious disease specialist on Monday. He checked her over good, and ordered some more blood work. Madilyn has really come a long way since all this began. She had her blood drawn with no numbing cream or numbing spray, and didn't even cry. They even had to stick her twice because the first time, absolutely no blood would come out. The tech said she was probably dehydrated, so we had her drink a big glass of water, and they put a heating pad on her arm, and then the second time everything was fine. I was beginning to wonder if she had snuck out and became a vampire without me. But she did great, no tears, no drama. It's actually kind of sad, but good too. A 10-year-old child should not have to go through all of this, but at least she is learning that she can trust us when we say that she will be okay and not to worry.
He said that none of the cultures they took from the mass are doing anything. No bacteria is growing. So, we still have no idea what this mass is or why it happened, and we most likely never will.
He called me today with the results from her blook work, which are a little alarming. The day of her surgery, blood work was done, and her SED rate was 51, which was to be expected, since the SED rate detects inflammation in the system, and we knew the mass was inflamed. A normal SED rate should be anywhere from 0-20. So on Monday, her SED rate was 79! He is definitely concerned about this, but said it could still be a side effect from the surgery. But none the less, he will order another round of labs to be done the day of her next surgery, and see where the SED rate is at then. Hopefully it will have come done. She seems fine and is feeling fine. She looks tired to me, and she still doesn't seem to have much of an appetite. She is continuing to take her antibiotic, and has even learned to swallow that giant capsule, and believe me when I tell you it is a big one! Told you she has come a long way.
She is going to have quite the scar from all this. Her new incision is about 3"long diagonally across her clavicle bone from top to bottom. But she doesn't seem to care. She is still to young to be so vain, thank goodness.
That is about it for now. I will keep you posted on any new updates!
8 years ago