Test Test Test

Due to our lack of detail in our most recent posts, it might be helpful if I start from Monday to bring everyone up to speed. Bare with me, its been a long three days.

Monday

Faith had a scheduled well check at the pediatrician's office on Monday in Topeka. During the appointment the doctor was checking Faith out and she began twitch uncontrollably for about 1 to 2 minutes on the medical table (it looked like she was having a fall dream over and over, tensing her legs and arms repeatedly). After the episode was over Ashley asked "What was the that?" and the doctor replied "I think we just witnessed a mild seizure". He advised that we just keep an eye on Faith and call if it happened again. About two hours later Ashley was home and Faith began to twitch repeatedly again. Ashley called the pediatrician and was told to take Faith to Children's Mercy ER immediately to try to figure out the issue.

At the ER things went pretty smooth. She had several tests, described in the previous post, but no more episodes. We described the events of the day to about 100 different doctors and they eventually decided that Faith should be admitted for more testing to find out the problem. During the tests and the admission process the nurses began to notice that her blood/oxygen saturation (OS level) were dipping unusually low. We informed them that this was the typical even during our stay in the NICU. They thought it was something that should be investigated while we are here.

Tuesday

The days kind of run together so I'm not quite sure the sequence, but by the end of the day on Tuesday she had been through the following tests.


CAT scan - Ensure the ventricles in her brain are not enlarged. Everything looks great.
Blood test - Bacteria in her blood would be a sign that the shunt or one of her incisions were causing an infection. These results have been negative to date, but the testing results will not be final until Friday.

Newborn screen - This test is for a number of things, but they used it specifically to rule out issues with her thyroid.
EKG - Measures her heart rate and rhythm. There were no irregularities.

EEG - This measures her brain waves. There was nothing there to implicate seizures.

All the tests had come back with good results, but left us wondering what the episodes could be. In the afternoon the neurologist who had been reviewing our case visited Faith. After looking her test results over, especially the EEG, he ruled out any potential that the episodes were seizures. Praise the Lord! He ordered more tests for Wednesday and offered a couple of possibilities for the low OS levels. Gastroesophageal Reflux (like acid reflux for infants) could cause breathing issues resulting in low OS. Compression of the brain stem might also be the problem. He advised that we get an MRI (detailed scan of the brain) and have an occupational therapist observe her eat to see if she has any abnormal issues eating.

Tuesday was a long day of tests, but we were so glad to hear that she is not having seizures.

Today

During the MRI today Faith's OS dropped, like it has been, and they had to stop to give her oxygen before the scan was complete. This is a one hour procedure which she has to either be sleeping or sedated for and she woke up during the oxygen supplementation. The neurosurgeon has requested that this test be done again (this is scheduled for tomorrow). However, there was enough information from the MRI that the neurologist has deducted that Faith has what is called a Chiari 2 Malformation. This is a condition commonly associated with Spina Bifida where the brain is pulled down in the scull. The pressure in this area could cause issues with vital functions such as breathing.
If you would like to do a little reading on the condition, I think this looks like a pretty good website. http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm#157703087

While it is nice that we finally have a direction on something, the neurologist went on to explain that the only way to really fix this is a decompressioin surgery. This procedure involves removing bone to reduce the pressure on the cerebellum. The neurologist said it would be the neurosurgeons decision on weather or not this surgery should be performed. After speaking with other staff we have come to the understanding that it is highly unlikely that he will perform this surgery. There are no guarantees that the surgery would actually fix the problem and the surgery is considered pretty invasive. The neurosurgeon will have a better idea on weather this procedure will be necessary after the MRI tomorrow.

When we first arrived at the hospital Monday we were under the impression that we would be out of here after a night of observation and a few tests. After the events over last couple of day's I feel like there are no guarantees that we would be leaving tomorrow, but that's what we are hoping for. I guess we will see.

Sorry for the long blog, but a lot has happened over the last few days. If I wasn't clear on anything please comment and I will try to explain it better. It's hard to convey all we've learned over the last few days and not be confusing.

Thanks for your prayers.