Another long day.

Well, we’ve had a chest x-ray, abdominal x-ray, CT scan of the head, CT scan of the chest with contrast, and the usual expected blood work. Testing all went smoothly. Do we know anything yet? No. Now we wait for the doctors to come talk about results. Meanwhile, Amanda is tired. Still swinging like a pendulum from alert and energized to limp and tired.

Now I have to educate my reading audience.

There’s this condition called ‘Arnold Chiari Malformation’ that spina bifida patients are prone to. Picture the brain as a, well, brain-shaped orb, with a stem – the brain stem protruding out the back. That brain stem holds all the nerve fibers that come out of the brain as they descend down the back. This long cord of nerve fibers is enclosed by bony vertebrae that keep the nerve fibers safe and contained in the spinal column. Imagine these nerve fibers going through this tube, the spinal column, and the tube being too tight. That’s Arnold Chiari Malformation. Nerve fibers exiting the brain get squished and compressed in the too tight spinal column and pressure on nerves is not a good thing. Think of pinched nerves that cause pain or numbness. Amanda had this condition when she was in elementary school and we had surgery to correct it.

Last night when I posted on all the spina bifida websites that I network with about Amanda’s pneumonia and all the other issues she was having, every one of them came back with the same answer: Arnold Chiari Malformation. I replied to them that she had surgery to fix that already. They replied that it doesn’t matter. Especially with her having it so young, it sometimes has to be repeated. One adult spina bifida women had it fixed 3 times. When I googled it the symptoms included: tachycardia (high heart rate – which Amanda has), nystagmus (eyes that shift back and forth – something that I’ve notice a lot lately with Amanda), sleep apnea (hello – a major problem for Amanda), dizziness (yes sometimes), nausea, and impaired swallowing with choking. All those symptoms described Amanda! So I really believe that is what we may be dealing with. I don’t deny that she had pneumonia, but I believe it contributed to her pneumonia. I don’t think I have everyone here on board with me on this one yet so I put an email out to the nurse who is head of the spina bifida clinic at Children’s Hospital to please tell us how to hook up with the neurosurgeons there. Adult spina bifida patients are welcome to still see their pediatric neurosurgeon at Children’s Hospital.

I have to believe that the neurological issues that are affecting her breathing are what causing Amanda’s pneumonia. I think the pulmonary doctor here is looking at her with blinders and seeing only lungs since he has limited familiarity with spina bifida. To ‘fix’ Amanda’s breathing issues, his next step is suggesting a tracheostomy – and I just couldn’t do that to Amanda. No no no. Everyone on the network of spina bifida websites said “Look at shunt issues and Arnold Chiari Malformation before you do a trach.” The rallying cry from all was to go see the neurosurgeon who works with spina bifida patients absolutely before doing anything.

So that’s where we are. Problem is we are at Wyandotte/Henry Ford Hospital and the neurosurgeon we want is at Detroit Children’s Hospital. Here’s hoping we can share info and get the right person to look at Amanda.

Sorry to bore you all with details – but it helps to write it all so I don’t have to explain it a million times.

Getting tired of this. Miss my home: haven’t been home with Ted in over a week now. I am here at the hospital or catching some sleep at home while Ted is here.

sigh

just Laurel