March 16- Rayden has been fighting reflux horribly. He stiffens his body, throws his head back, gasps for breath and swims his arms like he is drowning. Milk will then shoot out of his mouth and nose followed by an agonizing scream. Last week Dr. Elton adjusted the shunt to 1.5 allowing it to drain more so when Rayden started refluxing clear liquid instead of milk I was afraid it was CSF. I called his pediatrician and she increased his daily dosage of Zantac. Sunday night he had an extreme reflux episode where Linda, Michael and I passed him around trying to calm him down but nothing would help. He continued to act like he was drowning with clear liquid and bubbles coming out of his nose and mouth. He couldn't catch his breath and would scream out in pain. This lasted for over 10 min. I called our pediatrician who instructed us to go to the ER. We started grabbing things and jumped in the car. Then he calmed down so we decided to wait until the next day. Monday morning I took Rayden to see his pediatrician. She said she couldn't see anything wrong with him as far as general medicine is concerned but she is worried that his excessive shunt drainage is causing his reflux to get progressively worse. She contacted UNC Chapel Hill and they wanted us to go straight to the ER and have them page pediatric neurosurgery.
We arrived at UNC Chapel Hill ER at 1:30. After seeing two ER attending doctors and a pediatric neurosurgeon they decided to do a Rapid Sequence MRI and Xray to examine his shunt. Rayden hated the xray! He was strapped to a wooden board and screamed the entire time! It was horrible!!!! He didn't mind the MRI though. It was cushioned and he was covered with warm blankets.
After comparing his last MRI to this current one the pediatric neurosurgeon stated the fluid
outside the left part of his brain (between the skull and brain) had decreased, but the ventricles size
inside the brain had increased. The catheter has pulled down now into the fluid space so it should be draining adequately. He saw fluid collection in the spinal cord caused by increased pressure translating down the cord. He was confused by all of this stating he is getting conflicting information because the MRI scan does not correspond with the visual exam. His fontanel is not bulging and he is acting fine. This leaves them to believe surgery is not urgent at this point but they do want to admit him for observation. They started an IV and we were admitted to a room around 9:00 pm. What a long day!
March 17- After drinking his last bottle at 11:00 pm Rayden slept all night! He wasn't hungry, of course, due to the IV. Dr. Elton says the MRI showed that Rayden's brain is now thicker with expanding tissue and is no longer compressed! Praise God!! He can trace the bone edges in his head and believes the shunt is draining properly for now. He believes the shunt could be what they call a 'stuttering shunt', meaning it goes in and out due to excess protein or debris so he is not discounting a shunt issue. At the moment there is no need to rush into surgery though. He adjusted the shunt to 1.0 which allows it to drain more CSF. He recommended Rayden see a gastroenterologist due to his acute reflux issues. He thinks the sphincter between his esophagus and stomach is not working properly. He believes this may be contributing to the shunt issue because if his tummy is tight causing increased pressure it challenges shunt drainage. The pediatric team is changing his reflux medicine in the mean time and he is receiving another swallow study at 3pm.
Our poor little fellow. Why does he continue to receive all these challenges? Hasn't he been through enough? Please God, heal him and stop all this pitiful torture on my sweet little baby. I know he has a reason and purpose for being here, but I hate seeing him in pain. Not being able to hold him and take away his pain is heart wrenching for me. I'm so glad he has his 'ducky' to help soothe his fears.
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