Whitney had her MRI under sedation on Friday. We arrived bright and early at Cook Children's. They allowed me to stay with her until they put her IV in. We were taken to a room where they put a gas mask on her. She breathed in a few times and her little eyes rolled back and she was out. After that they gave her some meds through her IV and she was out for over an hour for the MRI. After about 1.5 hours we were called to the recovery room where they allowed us to hold her. She was crying, but soon fell back asleep in my arms and we were told to allow her to sleep it off. I was concerned because the last time she was sedated she spiked a high fever. However, the nurses and Anesthesiologist seemed to think it may have been due to a drug they gave her to dry up secretions which they did not give this time. I guess that was right because she did not get a fever this time. They told us that her stats did drop a bit at first, but they gave her something to bring them back up and she was also given something for nausea afterward due to her gagging. She was pretty congested after she woke up from the breathing tube, but quickly coughed it all up and accepted some Pedialyte in her sippy cup. We were in recovery for about an hour or more.
After they released us we saw the Neurosurgeon. The Neurosurgeon we saw on Wednesday was in an emergency surgery, so we saw a different one. He viewed her MRI and compared it to one that was done last December. He showed us the pictures and explained everything. He was great! He explained that Whitney has had this excess fluid in and around her brain all this time, but it has not changed. In other words, it has not increased in amount. He explained that it is abnormal to have this excess fluid, but since it doesn't seem to be changing there is not really a reason to do anything about it. Apparently, what is abnormal for most people is "normal" for Whitney. She has an abnormally large head (way off the charts and the same size as my head). After looking at the pictures, we saw a normal brain which is gray with brain matter and a small amount of white for fluid. Whitney's brain has the gray matter, but there is fluid/white all in the crevices throughout the brain with a large accumulation of fluid inside and around the ventricles (which are larger than average) and around the outside of the brain. The doctor said as long as the fluid amount isn't changing significantly, then there's probably nothing to worry about. He did inform us that she probably shouldn't be a pro football player. I guess we'll have to rely on the boys to fulfill that dream!
Another thing the doctor said was that there's no way to know how smart/intelligent/mobile a person is going to be by looking at their brain anatomy. He said he's seen some MRIs that show missing pieces of brains and show no reason for life to exist and the people can be perfectly normal. He's also seen some anatomically perfect brains on patients who are completely mentally and physically disabled. There's just no way to know what to expect. Only time will tell. We are supposed to keep a close eye on her head circumference measurements and watch that they do not show a steep upward slope, but stick to a normal curve although the curve will always be way above the lines of the graph. A sharp increase in head size could mean that the fluid is increasing too fast and that would mean she needs to be reevaluated as soon as possible. We were also told to watch for abnormal vomiting or fever that does not seem to be related to a standard illness.
In the meantime, we have taken Whitney to a different Pediatrician who we feel is more aware of chromosomal abnormalities and was recommended by her Physical Therapist. We love her and feel that she will be helpful in watching Whit's progression with us and helping us to see any abnormalities that might need further investigation. She has scheduled Whit for a swallow study, but we are going to call Monday and request to have it done at Cook Children's. It was scheduled to be done in Abilene, but recently we were encouraged to try to have all procedures done at Cook to allow her specialists better access to her records. I also always feel much more comfortable there just because they only deal with kids and are so good!
So, in summary, Whitney does not need a shunt for now. It is unclear if she ever will or if anything will ever need to be done to her brain. For now, we are just so thankful that we have escaped the possibility of brain surgery and we will continue to pray that it will stay that way. Thanks again to everyone who prays for our little girl and for all the kind words. It is amazing to us when we see people we don't even know who have heard of our little girl. We introduce ourselves and they say, "Oh! You're Whitney's parents!" You have no idea how special that is. It is so encouraging that there are so many people watching her story and keeping up with her progress. We are humbled by the many messages and emails we receive from people we know well and some that we haven't heard from in years. They are all welcomed and appreciated. I wish I had the time to sit down and respond to each of you. For now, thank you.
