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NICU Diary - Day 5

Updated: Nov 2, 2018

Wednesday, October 11, 2000

Today I was baptized before my first surgery.

At 8:00 a.m. this morning I was taken for a CAT scan. The neurologist and orthopedic doctors want to get a good look at my vertebrae and spinal cord from both the MRI and CAT scan.

My Grandma and Grandpa Dankelson met me around 11:00 a.m. today. They were very excited to finally see me and blow some kisses my way. At 11:30 a.m., I was baptized by the hospital Deacon. Mommy, Daddy, Grandpa Hostetler, and Grandpa and Grandma Dankelson were all there for my baptism.

Late this afternoon, we finally got the results from my MRI and CAT scan. The neurosurgeon, radiologist, and orthopedic doctors spent about 3 hours reviewing my test results. They had over 80 pictures to look at! So far, none of the doctors think that I have any damage to my spinal cord. My vertebrae and spine look to be OK, but it is very hard to tell everything for sure because of my preemie size. A lot of things will have to wait until I have grown a bit more. Because they can’t be certain that everything is OK with my neck, I will stay on my special surfboard. The orthopedic doctors are going to make a special neck pillow for me to keep my neck in alignment. I am by far one of the smallest patients that any of these doctors have ever dealt with!

I will be on this special board and brace for at least the next two weeks. The doctors will be monitoring my growth by ultrasounds. They plan to do another CAT scan and/or MRI in a few weeks after I have grown. The CAT scans expose me to a lot of radiation which can be very harmful, so we have to be careful about doing too many of those.

The neurosurgeon said that so far my brain is a normal size for my development. There are no signs of hemorrhage or fluid. Only time will tell how scholarly I will be though. About 5%-15% of people with Goldenhar Syndrome have an intellectual disability.

At about 5:00 p.m. today I had my first surgery. They took me to the OR, and the anesthesiologists put me completely under. This surgery was to secure my airway with a tracheostomy. The trach will be a lot safer for me. Now there is no need to worry about my airway passage being blocked. Mommy and Daddy will start “trach training” on Friday. The trach that they used for my surgery is a bit long for a small guy like me. They will be making a special “preemie” trach—all this custom stuff just for me!

ENT said they did not see any ear canal in my left ear. I probably don’t have any or very minimal hearing on that side. My right ear also isn’t completely up to par. I probably have some hearing loss in that ear as well. When I get a little bigger in about 2-3 months I might get to wear a special headband that will help me hear better.

My cleft palate is pretty severe. I will probably be fed with a special feeding tube through my nose. I will have surgery to fix my cleft palate when I am about 12-18 months old.

I got more presents today! Uncle Dean and Aunt Debbie sent me lots of great books and Grandma and Grandpa Dankelson brought me a book called “Butterfly Kisses” and a Beanie Baby. Uncle Dale and Aunt Marilyn sent me a cute frog rattle and my cousins Stephanie, Shawn, Matthew, and Michael all sent me really neat pictures that they drew.

I didn’t have quite so many things poked in me today. Mommy and Daddy could at least play with one foot and a hand. I have a special line in my right arm that is used for feeding and fluids and I still have an IV line in my head. Since the trach surgery, the ventilator is now in my trach tube instead of in my mouth. I moved around a lot more today and even tried to open my eyes a little this afternoon. That was a lot of work though so I fell back to sleep pretty fast.


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