Kendall Hughes

First post: Feb 6, 2019 Latest post: Feb 11, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
The beginning part of December, I took Karli and Kendall to Ingalls clinic in Webster for check ups, for daycare. Our NP indicated that she was concerned with the way the suture in the back of Kendall’s head was healing, and that her forehead was sticking out further than should be.  She said she was going to send us a referral to Children’s, in St. Paul for them to check her out for a possible helmet. Her appointment was scheduled for January 18. When I took her there, the doctor said they were going to send her down for a CT scan. Kendall was a rockstar. They had Finding Nemo playing on the ceiling and she just laid there and stared at the movie. The scan only took about 2 minutes, if that. They then had us go back upstairs and when the doctor came in, she informed me that Kendall had Craniosynostosis. They explained it as babies have 5 sutures in their skull that expand as their brains grow. Kendall has 3 sutures that are prematurely fusing together. The only way to fix this, is surgery. She has partial Sagittal Synostosis, and partial Lamboidal Synostosis. After they explained this to me, they sent us down so they could do a MRI of her brain. Thankfully, our little angel fell asleep before that and slept thru the entire process. It was very loud and took 7 minutes, so I was so thankful she slept. They told me a lot of information, but most of it I don’t really remember. I was not prepared for that news. 
The doctors and nurses have called several times to talk about the procedure. They also found, with the MRI that she has Chiari malformation. This is a condition where the brain tissue extends into your spinal canal. The surgeon said a lot of times with the one surgery, this condition will correct itself. The surgery is going to take 4 hours to perform. They cut from ear to ear along her hair line, and insert dissolvable plates and screws in her skull.  We have to go down on the 6th and have a tour of the hospital, and they will scan her head for a helmet. I’m assuming for protection after the surgery, but I’m not 100% sure. They will draw blood so they know what type she is, in case she needs a blood transfusion during surgery.  There will be a neurological surgeon and plastic surgeon doing her surgery. 
I will try and update as often as I can during and after the procedure. 
Thank you everyone for your continued thoughts and prayers.