Thursday morning we received a call from the neurosurgeon's nurse practitioner. She told us that Dr. C had consulted around and wanted to talk to us about surgery. Obviously, if a doctor wants to meet with you, it's not good. We've learned that pretty quickly. However, because Dr. C is two hours away Mark set up to talk over the phone. We were supposed to talk Thursday afternoon but after not hearing from him at the appointed time, Mark called the office and they told us he was in surgery.
So, we waited.
This is the interesting part.
I was out getting Easter clothes for the boys while Mark was cutting grass. One off the kids was in charge of watching Emmie. And that child was watching her. However, the child had set her on the couch, while the child was watching her...she fell off. Thankfully, the child caught her before she fell all the way on the floor but she led with her hands. I got home ten minutes after the episode and she was still crying and not using her hands too much.
A quick call to the pediatrician and I whisked her up and got her there faster than I will admit. Dr. B sent her on to x-rays next door and called the radiologist to let him know about her NF. They also gave her a bit of motrin. Quick x-rays and we were back to Dr. B to await results. Thankfully, by that time, she was finally settling down and with her arm braced against me, went to sleep. Over an hour of pitiful painful crying. I was heartbroken and Dr. B was getting worried.
Thankfully, the x-rays showed nothing was broken. The best that Mark and I can figure is that she sprained her wrists. She continued to favor her wrists the rest of the night but did use them some. Saturday was a bit better.
So, on the way home we got the call from Dr. C. He had consulted with ENTs, general surgeons, and everyone else in between all across the country. They were all in consensus, something needs to be done sooner rather than later. The reasoning is that the worse the kyphosis gets, the harder it will be to repair it and the less successful it will be. Dr. C looked at other options besides surgery but Dr. W confirmed that chemo would not be good at her age or for the type of plexiform neurofibroma.
That leaves us with one option...surgery. A general surgeon and Dr. C will both be working on Emmie. We should be hearing from the scheduler within the week with possible dates. We do know that it will be within this next month. Because the kyphosis hasn't gotten significantly worse in the past six months, we don't want it to keep heading in that direction.
The hope is that the surgery, which will remove as much of the plexiform as possible (called debulking), will significantly correct the kyphosis. Again, the goal is to try and delay the kyphosis correction as long as possible because her bones are so soft (due to age).
I feel like I'm typing somebody else's life right now. Not ours. But here it is. If you ask how we're doing, we'll be honest...not good. We know God is in control. We definitely trust Him. But this is so hard.
We will update when surgery day is scheduled. For now, if you feel led to pray, here is what God has laid on our hearts:
1. For steady hands and wise doctors.
2. I am feverishly trying to plan out the rest of the kids' school so that they can work on some of it while we are in the hospital and recovering. Please pray I can get it all done and getting all the normal travel things ready.
3. Peace for the kids and us and our family.
4. Good coordination of schedules with grandparents, aunts, or other childcare volunteers. We have expressed to both our sets of grandparents that we would like for them to sit with us during the procedure. That means we'll need childcare for the children who won't be at the hospital.